Podcasts about ts alliance

In the first episode of TSC Now, host Dan Klein dives deep on the upcoming Virtual March on Capitol Hill taking place March 1-5, 2021. Due to the ongoing COVID-19 pandemic, the TS Alliance has decided to protect our volunteers by holding the march virtually. The March on Capitol Hill is the TS Alliance’s annual … Continue reading Episode 20: The 2021 Virtual March on Capitol Hill →

They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC. Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Brooke is a mom, TSC advocate, Adult Regional Coordinator for the TS Alliance, and also Hairstylist. Check out her Facebook here: https://www.facebook.com/brookey21 Jill Woodworth. (Human being. Writer,) Podcaster. Chronicler of being human. Parent of 5, 3 of whom have Tuberous Sclerosis Complex, each with varying effect Committed to giving voice to the underdog, the oppressed, those for whom being heard is crucial to survival and quality of life. If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and desperate of situations often led to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market. Contact me on linked in or drop me a note on https://tsctalks.com/ or pjlacy6@gmail.com. Offering podcast sponsorship, advertising, consulting, research, speaking and more. Here is an excerpt from the transcript, click link for full transcript: https://otter.ai/u/Y6Z9mem7vmGFueMlLMBQnPsaV34 “we've done our best to advocate and support our daughters, we've had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they're dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience. Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with my daughter. But listen, that boat was sinking” They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC and others who are dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience. Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with my daughter. But listen, that boat was sinking..." Brooke’s links: https://www.instagram.com/_b3mor34u_/ YouTube: https://www.youtube.com/channel/UCdP1KUfMBhO2l4bDHaciM0w Jill: https://linktr.ee/jillwoodworth

They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC.Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Brooke is a mom, TSC advocate, Adult Regional Coordinator for the TS Alliance, and also Hairstylist. Check out her Facebook here: https://www.facebook.com/brookey21Jill Woodworth. (Human being. Writer,) Podcaster. Chronicler of being human. Parent of 5, 3 of whom have Tuberous Sclerosis Complex, each with varying effect Committed to giving voice to the underdog, the oppressed, those for whom being heard is crucial to survival and quality of life. If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and desperate of situations often led to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market. Contact me on linked in or drop me a note on https://tsctalks.com/ or pjlacy6@gmail.com. Offering podcast sponsorship, advertising, consulting, research, speaking and more.Here is an excerpt from the transcript, click link for full transcript: https://otter.ai/u/Y6Z9mem7vmGFueMlLMBQnPsaV34 “we've done our best to advocate and support our daughters, we've had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they're dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience.Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with my daughter. But listen, that boat was sinking”They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC and others who are dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience.Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with my daughter. But listen, that boat was sinking..."Brooke’s links: https://www.instagram.com/_b3mor34u_/ YouTube: https://www.youtube.com/channel/UCdP1KUfMBhO2l4bDHaciM0w Jill: https://linktr.ee/jillwoodworth

In episode 16 of TSC Now, host Dan Klein talks to two of the TS Alliance’s Education Parent Mentors to better understand how parents should approach making the decision on sending their kids back to school during the ongoing COVID-19 pandemic and what rights they have to advocate for the services their kids need. This … Continue reading Episode 16: COVID-19 and Back to School →

In episode 15 of TSC Now, host Dan Klein continues exploring how to manage harmful and disruptive behaviors associated with TSC-associated neuropsychiatric disorders (TAND) during the ongoing COVID-19 pandemic. Then he explores a new partnership between the TS Alliance and SeizureTracker and how it’s advancing both our understanding of TSC and epilepsy. First, Dan talks … Continue reading Episode 15: Managing Behaviors During COVID-19 (Part 2) + A New Partnership with SeizureTracker →

I had the pleasure of having Brielle Izabelle join myself and co-host, Brooke Alisha on the podcast to discuss her lived experience as a young adult living with Tuberous Sclerosis Complex. Brielle is from New Jersey, is a college student at Fairleigh Dickinson and just launched a YouTube channel. This is the description she includes on her YouTube channel, linked below: “hey everyone! My names brielle Isabelle and I would love if you could join the bbsquad! Here I hope to talk about my disease Tuberous Sclerosis and raise awareness! I also want to make my channel super personal with Q&A’s, make up videos , pranks and more. CATCH UP ON SOME VIDEOS LIKE COMMENT AND MOST IMPORTANTLY SUBSCRIBE AND SHARE!”My co-host for this episode was Brooke Alisha, Brooke is our TSC Talks YouTube Vlogger and is an adult and parent living with TSC. She is also a TSC Advocate, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope and I was grateful to have her jump right in and contribute to this interview with her own insights and understanding of TSC related challenges and add another valuable perspective to our discussion.As a parent of three offspring with TSC who has been through quite a sampling of the TSC experience in terms of encountering ranges of manifestations, treatments, surgeries, medications, and interfacing with systems of care, I am always learning what I don’t know about another’s personal experience, and grateful to gain yet another glimpse of how others navigate and come through their own personal crises and come to understand and put in place a framework for moving forward and accepting the diagnosis without letting it define them. This was yet one more “schooling” I received on the many colors and faces of this complicated diagnosis.I am sharing some pertinent quotes that help illustrate the content we discussed. Brielle discussed her greatest challenges growing up with a TSC diagnosis, those being educational and mental health challenges. “You know, I've dealt with school situations, like bullying because of how intense it really was for me, I did struggle. But the school system that I was involved in, they were amazing. And I was able to be super successful in school. I went to my dream college, and education is the biggest way that this has impacted me. And now as an adult, or young adult, I think that it really affected me with my mental health, which is something that I had no idea it would. I think that since my whole life has been relatively stable, I didn't realize that okay, you know, there's other things that aren’t, which has been my mental health, anxiety and depression and things like that. So, I think my whole life, it's really just been my education. But now that I'm an adult, and I'm more in charge of my education, it's definitely my mental health and mental health awareness. So that's the biggest thing and it's affected me a lot to be honest with you”Brooke also shared her perspective on what Brielle mentions, also tying in TAND, which stands for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders; “I know like 80% of people deal with a mental illness and you know, sometimes you deal with it worse at different ages. I honestly didn't really pay attention to it when I was younger, because I didn't know, but watching my daughter struggle with the bullying and the IEP s and the learning and the therapists and all that stuff. It is very traumatic for someone to go through at any level. You talk very well, and you are very educated. Whoever has worked with you has done an amazing job. And I think that's incredible growth for you”Brielle underwent brain surgery at age 8 and states, “So I think that brain surgery was one of those things where I was sort of like, this is happening, you know, what is going to happen after this? How am I going to be impacted, I wasn't educated. All I knew was that, you know, one of my tumors in my brain needed to come out and it needed to come out as soon as possible. So, I think that being who I am today, as well, I could say that if I didn't have brain surgery, I wouldn't know who I was, either. Because that was like my, my greatest achievement, you know, to survive something so traumatic like that. A lot of people don't come out of that. So I'm so blessed. And I think that going through that and now being so healthy today, is something that is just amazing, something that I had to do something that I had to face, I couldn't go around it, I can wait a year for it to be done”Brooke added, “I'm really thankful you talked about the brain surgery. My daughter had it when she was three, but like, that's what she lives off of…” this happened to me.” I always tell her it does not define you. But it is so hard to get that out of their head when they go through so much stuff and like you said, you blocked things out.” I also would acknowledge how important it is to not let these major medical events that are outside of one’s control define, but give one a sense of passion and purpose having gone through something most people never experience, living through it, and owning the courage and bravery it takes to reorient and not let memory of these traumatic events hold one hostage. Brooke elaborates on her own challenges with the mental health aspects of TSC, “Nobody understood my mental illness, you know, they were supportive and they kept me going, but until I got older and really dealt with it, I was in my home and wouldn't leave, and it was a really bad place. I was alone, it was devastating to my life. So to see you at 21, just, you know, I know that there still rough days, but you're glowing, you're doing incredible. And I am so thankful that you're reaching out to these other girls. I know that's been a huge support for my daughter, having her camp friends that all had TSC to talk to because you do get very lonely, nobody understands you, they don't even know what to say to you. So they say nothing and then you're left in a hole, you know. So I'm really thankful to hear your story and to hear you rise up from all this. I think it's great. I know there's going to be tough days, like you said, there's no cure, but you have to like rise above that and you're doing very well. You're doing a really good job.”I would echo that statement and will wrap up with this quote from Brielle on how she came to use journaling and ultimately vlogging to help her process her experiences and cope, “Something that I was actually very opposed to doing because I was so in denial that it would help me is journaling. I had an empty journal in my room that my dad gave me, and I put it all the way in the back of the drawer. And I refused to even write my name. I didn’t even want to draw in it. I did not want to even think about putting my feelings down. And one day I was feeling so terrible. And I said, I just want to get this out, even if this is the first and last time that I write in it, and ever since that day, I have not stopped writing in it every single night. Just like Brooke said, I will write, “you got this now, tomorrow's gonna be better.” You know, ask yourself the question, like, let me know how tomorrow goes and then tomorrow I'll write down today. Especially now that I can't see my therapist, I need a means of releasing how I've been feeling and I actually made a video about anxiety and depression as well. Writing in the journal and giving yourself motivational words, you know, it doesn't have to be something cliche or something that someone else told you. It’s something that is individualized to you. So yeah, I write like 15 pages written ..or I'll write like three pages a day of just thoughts and thoughts. And sometimes my hand will cramp up and I'll say, wow, you know, today was a rough day. Just go for something. Because sometimes it's just, very hard”Both these two women are powerful examples of coping with some off the beaten path challenges that few will encounter in their lifetimes and both have chosen to accept the fact that they have this condition, are not letting it define them but remain grateful for being able to be here now and find joy, meaning despite the daily roller coaster of circumstance. Tools mentioned for coping are journaling, vlogging, connecting with others that can relate and a lot of self-love, self-compassion and reminders on the mirror of just how awesome they are. Because it is so true. I was inspired and moved listening to both of these women and am glad to share this episode with my own daughters, as well as many others within and without the TSC community, who have dealt with and are dealing with similar issues related to self-esteem, mental health, and staying positive in this crazy world we live in.This episode is dedicated to my friend Paul Collins who passed away recently. Paul was a unique and inspirational individual I met in the local 12 step program when I had hit a personal bottom dealing with addiction and mental health stressors that led to a serious psychotic break. Paul inspired me to live the wisdom of the saying, “you’re only as sick as your secrets” which in part inspired the creation and evolution of this podcast. Thanks for listening! Brielle’s links: YouTube: https://www.youtube.com/channel/UCfFMGjj9KrOFG-k1d-MKXjQ Facebook: https://www.facebook.com/brielle.izabelle Brooke’s links:Instagram: https://www.instagram.com/_brookealisha_/ Facebook: https://www.facebook.com/brookey21 Twitter: @BrookeAlisha

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult Living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope. I had the pleasure of having Brielle Izabelle join myself and co-host, Brooke Alisha on the podcast to discuss her lived experience as a young adult living with Tuberous Sclerosis Complex. Brielle is from New Jersey, is a college student at Fairleigh Dickinson and just launched a YouTube channel. This is the description she includes on her YouTube channel, linked below: “hey everyone! My names brielle Isabelle and I would love if you could join the bbsquad! Here I hope to talk about my disease Tuberous Sclerosis and raise awareness! I also want to make my channel super personal with Q&A’s, make up videos , pranks and more. CATCH UP ON SOME VIDEOS LIKE COMMENT AND MOST IMPORTANTLY SUBSCRIBE AND SHARE!” My co-host for this episode was Brooke Alisha, Brooke is our TSC Talks YouTube Vlogger and is an adult and parent living with TSC. She is also a TSC Advocate, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope and I was grateful to have her jump right in and contribute to this interview with her own insights and understanding of TSC related challenges and add another valuable perspective to our discussion. As a parent of three offspring with TSC who has been through quite a sampling of the TSC experience in terms of encountering ranges of manifestations, treatments, surgeries, medications, and interfacing with systems of care, I am always learning what I don’t know about another’s personal experience, and grateful to gain yet another glimpse of how others navigate and come through their own personal crises and come to understand and put in place a framework for moving forward and accepting the diagnosis without letting it define them. This was yet one more “schooling” I received on the many colors and faces of this complicated diagnosis. I am sharing some pertinent quotes that help illustrate the content we discussed. Brielle discussed her greatest challenges growing up with a TSC diagnosis, those being educational and mental health challenges. “You know, I've dealt with school situations, like bullying because of how intense it really was for me, I did struggle. But the school system that I was involved in, they were amazing. And I was able to be super successful in school. I went to my dream college, and education is the biggest way that this has impacted me. And now as an adult, or young adult, I think that it really affected me with my mental health, which is something that I had no idea it would. I think that since my whole life has been relatively stable, I didn't realize that okay, you know, there's other things that aren’t, which has been my mental health, anxiety and depression and things like that. So, I think my whole life, it's really just been my education. But now that I'm an adult, and I'm more in charge of my education, it's definitely my mental health and mental health awareness. So that's the biggest thing and it's affected me a lot to be honest with you” Brooke also shared her perspective on what Brielle mentions, also tying in TAND, which stands for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders; “I know like 80% of people deal with a mental illness and you know, sometimes you deal with it worse at different ages. I honestly didn't really pay attention to it when I was younger, because I didn't know, but watching my daughter struggle with the bullying and the IEP s and the learning and the therapists and all that stuff. It is very traumatic for someone to go through at any level. You talk very well, and you are very educated. Whoever has worked with you has done an amazing job. And I think that's incredible growth for you” Brielle underwent brain surgery at age 8 and states, “So I think that brain surgery was one of those things where I was sort of like, this is happening, you know, what is going to happen after this? How am I going to be impacted, I wasn't educated. All I knew was that, you know, one of my tumors in my brain needed to come out and it needed to come out as soon as possible. So, I think that being who I am today, as well, I could say that if I didn't have brain surgery, I wouldn't know who I was, either. Because that was like my, my greatest achievement, you know, to survive something so traumatic like that. A lot of people don't come out of that. So I'm so blessed. And I think that going through that and now being so healthy today, is something that is just amazing, something that I had to do something that I had to face, I couldn't go around it, I can wait a year for it to be done” Brooke added, “I'm really thankful you talked about the brain surgery. My daughter had it when she was three, but like, that's what she lives off of…” this happened to me.” I always tell her it does not define you. But it is so hard to get that out of their head when they go through so much stuff and like you said, you blocked things out.” I also would acknowledge how important it is to not let these major medical events that are outside of one’s control define, but give one a sense of passion and purpose having gone through something most people never experience, living through it, and owning the courage and bravery it takes to reorient and not let memory of these traumatic events hold one hostage. Brooke elaborates on her own challenges with the mental health aspects of TSC, “Nobody understood my mental illness, you know, they were supportive and they kept me going, but until I got older and really dealt with it, I was in my home and wouldn't leave, and it was a really bad place. I was alone, it was devastating to my life. So to see you at 21, just, you know, I know that there still rough days, but you're glowing, you're doing incredible. And I am so thankful that you're reaching out to these other girls. I know that's been a huge support for my daughter, having her camp friends that all had TSC to talk to because you do get very lonely, nobody understands you, they don't even know what to say to you. So they say nothing and then you're left in a hole, you know. So I'm really thankful to hear your story and to hear you rise up from all this. I think it's great. I know there's going to be tough days, like you said, there's no cure, but you have to like rise above that and you're doing very well. You're doing a really good job.” I would echo that statement and will wrap up with this quote from Brielle on how she came to use journaling and ultimately vlogging to help her process her experiences and cope, “Something that I was actually very opposed to doing because I was so in denial that it would help me is journaling. I had an empty journal in my room that my dad gave me, and I put it all the way in the back of the drawer. And I refused to even write my name. I didn’t even want to draw in it. I did not want to even think about putting my feelings down. And one day I was feeling so terrible. And I said, I just want to get this out, even if this is the first and last time that I write in it, and ever since that day, I have not stopped writing in it every single night. Just like Brooke said, I will write, “you got this now, tomorrow's gonna be better.” You know, ask yourself the question, like, let me know how tomorrow goes and then tomorrow I'll write down today. Especially now that I can't see my therapist, I need a means of releasing how I've been feeling and I actually made a video about anxiety and depression as well. Writing in the journal and giving yourself motivational words, you know, it doesn't have to be something cliche or something that someone else told you. It’s something that is individualized to you. So yeah, I write like 15 pages written ..or I'll write like three pages a day of just thoughts and thoughts. And sometimes my hand will cramp up and I'll say, wow, you know, today was a rough day. Just go for something. Because sometimes it's just, very hard” Both these two women are powerful examples of coping with some off the beaten path challenges that few will encounter in their lifetimes and both have chosen to accept the fact that they have this condition, are not letting it define them but remain grateful for being able to be here now and find joy, meaning despite the daily roller coaster of circumstance. Tools mentioned for coping are journaling, vlogging, connecting with others that can relate and a lot of self-love, self-compassion and reminders on the mirror of just how awesome they are. Because it is so true. I was inspired and moved listening to both of these women and am glad to share this episode with my own daughters, as well as many others within and without the TSC community, who have dealt with and are dealing with similar issues related to self-esteem, mental health, and staying positive in this crazy world we live in. This episode is dedicated to my friend Paul Collins who passed away recently. Paul was a unique and inspirational individual I met in the local 12 step program when I had hit a personal bottom dealing with addiction and mental health stressors that led to a serious psychotic break. Paul inspired me to live the wisdom of the saying, “you’re only as sick as your secrets” which in part inspired the creation and evolution of this podcast. Thanks for listening! Brielle’s links: YouTube: https://www.youtube.com/channel/UCfFMGjj9KrOFG-k1d-MKXjQ Facebook: https://www.facebook.com/brielle.izabelle Brooke’s links: Instagram: https://www.instagram.com/_brookealisha_/ Facebook: https://www.facebook.com/brookey21 Twitter: @BrookeAlisha

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult Living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope. Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn't get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.” She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I'm like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”? After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they're like, um, you're pregnant, and we're going to put you on Prozac because we don't know if you'll handle the baby or if you'll keep it or anything” To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn't okay with that. It wasn't how I grew up personally. And I thought, there's a reason I'm having her. So, I'm going to just have her and I'm going to get through it. And if I lose her, then it's meant to be I had to live with myself personally.” Her baby daughter started having infantile spasms at 4 months and diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.” Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don't remember the details. It's like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don't know if it was like that for you, but I didn't have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.” Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it's a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn't going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making” She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella! “And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn't even know what it was, and I feel like it's not talked about enough. It's not expressed enough. It's not shown to families like okay your child might have TSC but look out for TAND, they need to be pre warned for this because you have no idea it will come hit you like a bus.” Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I'm going to take care of something, I'm going to take care of it the way it needs to be taken care of. How do you take care of that? I didn't know how to take care of that situation. That moment. everybody's lives are in danger. My son was being choked from the back. It was very traumatic.” So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise. “And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn't going to live there anymore. And once you decide that you must be at a really big place where you're like, you know, I'm ready. Because you're going to get tested and you're going to get tried, and it's going to try to break you, but you have to just rise up really. But you have to be at that place, and I can't tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.” Brooke uses premium nutrition, and continues to talk with her doctors, and this system has worked for her, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician” and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy. This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily! “I mean, there's been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that's been amazing, but just the miracle of being 36 now and being told at 30 I'd be in a wheelchair like that's a miracle. And when people see me and do that stuff, I want them to know that it's never too late. You still have a life to live!” Bravo Brooke! Brooke’s links: Instagram: https://www.instagram.com/_brookealisha_/ Facebook: https://www.facebook.com/brookey21 Twitter: @BrookeAlisha Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/ TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/ Brook’s hair services: https://www.facebook.com/brookesbliss13hair/ https://www.facebook.com/thecolourpalettesalon/ Thrive/Le-Vel: https://brooke2330.le-vel.com/

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult Living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope.Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn't get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.”She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I'm like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”?After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they're like, um, you're pregnant, and we're going to put you on Prozac because we don't know if you'll handle the baby or if you'll keep it or anything”To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn't okay with that. It wasn't how I grew up personally. And I thought, there's a reason I'm having her. So, I'm going to just have her and I'm going to get through it. And if I lose her, then it's meant to be I had to live with myself personally.” Her baby daughter started having infantile spasms at 4 months and diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.”Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don't remember the details. It's like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don't know if it was like that for you, but I didn't have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.”Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it's a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn't going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making”She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella!“And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn't even know what it was, and I feel like it's not talked about enough. It's not expressed enough. It's not shown to families like okay your child might have TSC but look out for TAND, they need to be pre warned for this because you have no idea it will come hit you like a bus.”Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I'm going to take care of something, I'm going to take care of it the way it needs to be taken care of. How do you take care of that? I didn't know how to take care of that situation. That moment. everybody's lives are in danger. My son was being choked from the back. It was very traumatic.”So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise. “And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn't going to live there anymore. And once you decide that you must be at a really big place where you're like, you know, I'm ready. Because you're going to get tested and you're going to get tried, and it's going to try to break you, but you have to just rise up really. But you have to be at that place, and I can't tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.”Brooke uses premium nutrition, and continues to talk with her doctors, and this system has worked for her, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician” and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy.This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily!“I mean, there's been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that's been amazing, but just the miracle of being 36 now and being told at 30 I'd be in a wheelchair like that's a miracle. And when people see me and do that stuff, I want them to know that it's never too late. You still have a life to live!” Bravo Brooke!Brooke’s links:Instagram: https://www.instagram.com/_brookealisha_/ Facebook: https://www.facebook.com/brookey21Twitter: @BrookeAlisha Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/Brook’s hair services: https://www.facebook.com/brookesbliss13hair/https://www.facebook.com/thecolourpalettesalon/Thrive/Le-Vel: https://brooke2330.le-vel.com/

In episode 9 of TSC Now, host Dan Klein talks to Tuberous Sclerosis Alliance President and Chief Executive Officer Kari Luther Rosbeck. They discuss her favorite memories from the organization’s 45th anniversary year in 2019, the major goals and initiatives for the organization in 2020, the newest members of the team, and upcoming events at … Continue reading Episode 9: The State of the TS Alliance →

“You are here for a purpose. There is not a duplicate of you in the whole wide world; there never has been, there never will be. You were brought here now to fill a certain need. Take time to consider what it might be.” Lou Austin. This happens to be one of Daniel Price’s favorite quotes and as you will see and hear, has truly framed the way Daniel lives his life. Daniel Price, a rare disease and adoption advocate, and young adult from the Seattle Washington area who is living with TSC. He’s Auxiliary Adult Regional Coordinator West and has been an active volunteer for the last 3+ years. Working in the airline/travel industry part-time, has given Daniel the opportunity and scheduling flexibility to travel the country and to parts of the globe to participate in TSC conferences and other events such as; Step Forward to Cure TSC walks in Seattle as well as Northern and Southern California; Sound Bites in Minnesota; Regional Conferences in Houston, San Diego, Saint Louis and Los Angeles; and the 2018 TSC World Conference in Dallas. Recently he attended the TS Alliance Board Meeting in Chicago and the 2019 March on Capitol Hill in Washington, DC. He’s flown to Melbourne, Australia to help them with their first Comedy for a Cure. Daniel was adopted from mainland China at the age of 3 and diagnosed with TSC at the age of 6 when visiting a dermatologist to examine the red bumps on his face. He is the only family member with a rare genetic disease and states, “I've had seizures as a younger child. Development delay issues in K through 12 education and had a special education program. I've gone through a speech and language program, was kicked out and then put back in later in my K to 12 programs and have had many other challenges through trying to maintain in work, living and other daily challenges as well facing life “Daniel’s mother sought the best treatments for Daniel as she could at the time but the TS Alliance was just being formed and there was not as much information available about TSC as there is currently. Eventually, Daniel found the TS Alliance, stating, “I reached out to- I think the headquarters in DC and they mailed me out to a couple of people in the Washington area. And they email-connected me to someone named Gloria, and I was like, Oh, okay. And then she's said that we're going to have a picnic coming up in Seattle. So, then I go to this picnic and meet other people (with TSC & families), and it changed my life. It changed the way I saw it. So yeah. I've learned a lot from Gloria and the other people that within the TSC community within the Pacific Northwest”Seeking better medical care, Daniel traveled to the TS Clinic in Cincinnati and was excited to be able to visit all TSC related specialists in one location and talk to medical professionals with specific expertise in treating TSC. He carries a book on TSC with him to every appointment and hospital visit to share with any and all of the treating team to not only make sure they have a quick reference guide on TSC at their fingertips but also raise awareness of the condition and educate as many people as possible. Outlining ongoing challenges Daniel states, “I mainly struggle with TAND, (stands for) tuberous sclerosis complex neuropsychological disorder. I struggle a lot with depression, anxiety, mood swings, socializing with other people. And many people just don’t see it They see a regular person going to work, paying their bills, driving, going to school, but they don't see the outcome of what TAND or TSC. They don't see the real picture. They don't see the big picture of what TAND can do. I do get mood swings. There are times where I just want to like shut people off and shut off from the world when it's just too much sometimes”We discuss his return to China, with his entire family, and was able to meet caregivers and other members of the local community who remembered Daniel and what a moving experience this was. Daniel talks about coming out as a gay man being an active member of the LGBTQ community and his desire to find connections with others who are in this community that also have a rare disease. “So I came out four or five years ago…I came out as a gay man, a young person questioning my sexuality, but also I was trying to (a couple years ago), connect with people with a rare genetic disease, but also who have been adopted and part of the LGBTQ community as well. I have not been able to find anyone. I've been to other organizations on the west coast and other people who are LGBTQ but have not been able to connect with other people that have the other two aspects.”There’s a lot more in this episode. In conclusion, Daniel states eloquently; “the most meaningful thing is being able to advocate at different events, socializing with other people within the TSC community, connecting with them, learning from them. But being a voice for those that don't have…or can't give a voice. Learning how to cope with things from other people, learning their styles, learning how they advocate for change, being able to go to events and help raise money to help eradicate this disease. Being able to be that change, to help other people who can't help themselves or help other people within the community. They may be a little shy or closed off from other people, not only just here, not only just in the TSC community, but the LGBTQ community and adoption community, or any community. I am thankful to have the privilege to advocate, to be able to change the way other people perceive TSC Tuberous sclerosis complex-a rare genetic disease, adoption, LGBTQ or any of those communities.”Here are Daniel’s links! Facebook: https://www.facebook.com/daniel.price.1694 Instagram: https://www.instagram.com/pricendaniel/LinkedIn: https://www.linkedin.com/in/daniel-n-price-7270156a/https://www.tsalliance.org/wp-content/uploads/2019/06/06-June-Adults-with-TSC-Newsletter.pdfhttps://www.rareiscommunity.com/2019/11/27/navigating-a-forever-home-with-a-rare-disease-daniels-story/Links on Adoption: https://www.adoptioncouncil.org/ http://www.adoptioncouncil.org/2020-gala https://adoptionsbygladney.com/ http://www.gladneyasia.org/index.htmlhttp://cccwaen.mca.gov.cn/ China Center for Children's Welfare and Adoption (CCCWA) and Bridge of Love Adoption Services (BLAS) https://www.ccaifamily.org/ https://onesky.org/http://moveablefest.com/nanfu-wang-one-child-nation/?fbclid=IwAR3e4i5m-Ajkl1Bj5efLC88IJX7lnIFw1Py0qqBM66kv29tLog97RjSjlX4https://www.holtinternational.org/ LGBTQ links for Asian Americans who are LGBTQ:https://www.facebook.com/pg/crn.ngo/about/https://gapafoundation.org/ in SF Stay tuned for more, including information about a new podcast hosted by Thomas Van Antwerp, Chief Development Officer of Nicky’s Gardens of Hope discussing issues related to “The Cliff”….turning 21 with Autism, IDD, TSC…”, appropriately named, “Over The Cliff”. (https://nickysgardensofhope.com). Thanks for tuning in! https://tsctalks.com

“You are here for a purpose. There is not a duplicate of you in the whole wide world; there never has been, there never will be. You were brought here now to fill a certain need. Take time to consider what it might be.” Lou Austin. This happens to be one of Daniel Price’s favorite quotes and as you will see and hear, has truly framed the way Daniel lives his life. Daniel Price, a rare disease and adoption advocate, and young adult from the Seattle Washington area who is living with TSC. He’s Auxiliary Adult Regional Coordinator West and has been an active volunteer for the last 3+ years. Working in the airline/travel industry part-time, has given Daniel the opportunity and scheduling flexibility to travel the country and to parts of the globe to participate in TSC conferences and other events such as; Step Forward to Cure TSC walks in Seattle as well as Northern and Southern California; Sound Bites in Minnesota; Regional Conferences in Houston, San Diego, Saint Louis and Los Angeles; and the 2018 TSC World Conference in Dallas. Recently he attended the TS Alliance Board Meeting in Chicago and the 2019 March on Capitol Hill in Washington, DC. He’s flown to Melbourne, Australia to help them with their first Comedy for a Cure. Daniel was adopted from mainland China at the age of 3 and diagnosed with TSC at the age of 6 when visiting a dermatologist to examine the red bumps on his face. He is the only family member with a rare genetic disease and states, “I've had seizures as a younger child. Development delay issues in K through 12 education and had a special education program. I've gone through a speech and language program, was kicked out and then put back in later in my K to 12 programs and have had many other challenges through trying to maintain in work, living and other daily challenges as well facing life “ Daniel’s mother sought the best treatments for Daniel as she could at the time but the TS Alliance was just being formed and there was not as much information available about TSC as there is currently. Eventually, Daniel found the TS Alliance, stating, “I reached out to- I think the headquarters in DC and they mailed me out to a couple of people in the Washington area. And they email-connected me to someone named Gloria, and I was like, Oh, okay. And then she's said that we're going to have a picnic coming up in Seattle. So, then I go to this picnic and meet other people (with TSC & families), and it changed my life. It changed the way I saw it. So yeah. I've learned a lot from Gloria and the other people that within the TSC community within the Pacific Northwest” Seeking better medical care, Daniel traveled to the TS Clinic in Cincinnati and was excited to be able to visit all TSC related specialists in one location and talk to medical professionals with specific expertise in treating TSC. He carries a book on TSC with him to every appointment and hospital visit to share with any and all of the treating team to not only make sure they have a quick reference guide on TSC at their fingertips but also raise awareness of the condition and educate as many people as possible. Outlining ongoing challenges Daniel states, “I mainly struggle with TAND, (stands for) tuberous sclerosis complex neuropsychological disorder. I struggle a lot with depression, anxiety, mood swings, socializing with other people. And many people just don’t see it They see a regular person going to work, paying their bills, driving, going to school, but they don't see the outcome of what TAND or TSC. They don't see the real picture. They don't see the big picture of what TAND can do. I do get mood swings. There are times where I just want to like shut people off and shut off from the world when it's just too much sometimes” We discuss his return to China, with his entire family, and was able to meet caregivers and other members of the local community who remembered Daniel and what a moving experience this was. Daniel talks about coming out as a gay man being an active member of the LGBTQ community and his desire to find connections with others who are in this community that also have a rare disease. “So I came out four or five years ago…I came out as a gay man, a young person questioning my sexuality, but also I was trying to (a couple years ago), connect with people with a rare genetic disease, but also who have been adopted and part of the LGBTQ community as well. I have not been able to find anyone. I've been to other organizations on the west coast and other people who are LGBTQ but have not been able to connect with other people that have the other two aspects.” There’s a lot more in this episode. In conclusion, Daniel states eloquently; “the most meaningful thing is being able to advocate at different events, socializing with other people within the TSC community, connecting with them, learning from them. But being a voice for those that don't have…or can't give a voice. Learning how to cope with things from other people, learning their styles, learning how they advocate for change, being able to go to events and help raise money to help eradicate this disease. Being able to be that change, to help other people who can't help themselves or help other people within the community. They may be a little shy or closed off from other people, not only just here, not only just in the TSC community, but the LGBTQ community and adoption community, or any community. I am thankful to have the privilege to advocate, to be able to change the way other people perceive TSC Tuberous sclerosis complex-a rare genetic disease, adoption, LGBTQ or any of those communities.” Here are Daniel’s links! Facebook: https://www.facebook.com/daniel.price.1694 Instagram: https://www.instagram.com/pricendaniel/ LinkedIn: https://www.linkedin.com/in/daniel-n-price-7270156a/ https://www.tsalliance.org/wp-content/uploads/2019/06/06-June-Adults-with-TSC-Newsletter.pdf https://www.rareiscommunity.com/2019/11/27/navigating-a-forever-home-with-a-rare-disease-daniels-story/ Links on Adoption: https://www.adoptioncouncil.org/ http://www.adoptioncouncil.org/2020-gala https://adoptionsbygladney.com/ http://www.gladneyasia.org/index.html http://cccwaen.mca.gov.cn/ China Center for Children's Welfare and Adoption (CCCWA) and Bridge of Love Adoption Services (BLAS) https://www.ccaifamily.org/ https://onesky.org/ http://moveablefest.com/nanfu-wang-one-child-nation/?fbclid=IwAR3e4i5m-Ajkl1Bj5efLC88IJX7lnIFw1Py0qqBM66kv29tLog97RjSjlX4 https://www.holtinternational.org/ LGBTQ links for Asian Americans who are LGBTQ: https://www.facebook.com/pg/crn.ngo/about/ https://gapafoundation.org/ in SF Stay tuned for more, including information about a new podcast hosted by Thomas Van Antwerp, Chief Development Officer of Nicky’s Gardens of Hope discussing issues related to “The Cliff”….turning 21 with Autism, IDD, TSC…”, appropriately named, “Over The Cliff”. (https://nickysgardensofhope.com). Thanks for tuning in! https://tsctalks.com

In this episode, we are joined by Professor Petrus de Vries, Sue Struengmann Professor of Child & Adolescent Psychiatry, Academic Head: Child & Adolescent Psychiatry, University of Cape Town, South Africa and Alexis Minnaar, English and Geography tutor at DawnCroft Alexis was diagnosed with Tuberous Sclerosis Complex, at the age of two. Prof. de Vries and Alexis graciously joined me to engage in a discussion on TAND, a phrase coined by Professor de Vries himself, which is an acronym for Tuberous Sclerosis Associated Neuropsychiatric Disorders and its one of the most challenging aspects of managing a TSC diagnosis and is a clinical manifestation of TSC, along with the other manifestations. Recently, Professor de Vries’ along with Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) were awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation for the TANDem project, which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The two-part project will first focus on the development of a self-report TAND checklist and identification smartphone app, to measure how people are affected by TAND. The second part of the study will investigate the best ways to treat TAND, including agreement on suitable clinical guidelines for TAND. Following this work in identifying and treating TAND, the TANDem Project will help to prepare a global team of TAND researchers to raise awareness and lead future research into TAND. Bringing both Alexis and Professor de Vries together to discuss their lived experiences with TAND in a Q & A session to bring to light the perspective of patient, doctor and a parent, to hash out the very different experiences. Professor de Vries coined the term TAND when in need of a succinct way to sum up the grouping of symptoms in a way that is easier for families also to talk to others about. “It can be easier to say; “I have, or my child has epilepsy or I've got something on my skin or got a kidney thing” than to talk about anxiety, about mental health issues and about learning issues and about all sorts of stuff like that. So, the journey to share often takes even longer for people about those kinds of things. And that's why it was so important for us to find a way of building a kind of a language around TAND. And to give the message, the simple message to people is that TAND is as much part of tuberous sclerosis complex as all the other things are. And therefore, it's not something to be ashamed about or shy about or embarrassed about. This is something that we need to know about them that we can do something about. And so that really is, you know, you you're talking about how do we how do we put down on a level playing field with all the other things, it's just as important and just the same as all these physical health problems that people have learned to talk about and have learned to treat in a better way. And so for many decades, very little research was done on behavior and psychiatry and mental health. It was, in 2012, when we had the consensus conference in the US to revise the diagnostic criteria and to revise the treatment guidelines that we the neuro psychiatry group that said, What? We've been trying to tell people to do these things, and nobody has been doing anything. What can we do to make it simple, so that people might start to listen to us? And the one thing we realized was, we've been talking about know, you have to think about the behavioral issues and the psychiatric issues and the academic issues and the intellectual issues and the psychosocial issues. And you know, by the time I said that whole sentence, people aren't listening to me anymore. And so that was why we decided we needed to come up with a simple term that puts all these things together. And that was the birth of the word TAND, which stands as you know, for TSC, associated neuro psychiatric disorders across all those different levels. We wanted a simple word that you and I can talk about TAND in one word, and then we can start to break it up, rather than to talk about all these fuzzy words that in a psychiatrist often like to talk about, that nobody follows. Right? So that was really the reason to give us that you can talk about it.” Alexis shares her own lived experience with TAND as well; “(my mother) She said I was having temper tantrums at school starting at about age seven. And she actually got to a point where she had to speak to my doctor say, look, you know, is it the TSC that's causing this or is it anger, or is it discipline issues? Or, you know, how do I deal with this? And so, my pediatric neurologist, her advice at the time was-there's no excuse for bad behavior. So, my mom had to put me on a strict discipline, freedom within boundaries sort of routine. I had strict routines in terms of schooling. Whether I was homeschooled or not, you know, you wake up at seven, you started school at eight, you work 'til two. And after that, you could do what you wanted. You took your medicine at seven, you know, they were they were structured systems in place so that I didn't have an excuse, and it's been very helpful. I did go through the TAND checklist last night, actually. And I kind of giggled because I realized I do kind of struggle to in terms of organization, I think you called it executive functioning” I am personally passionate about TAND because of the impact it had on our entire family. There tends to be a ripple effect when dealing with a lot of dysregulated and unpredictable behavior on top of seizures for long time periods and the whole family develops dysfunctional ways of coping. So when I heard Professor de Vries talk about TAND, first on YouTube and then in person at the World TSC Conference in 2017 in Dallas, the entire history of our life with TSC started to make more sense. More regarding the TANDem project; “And so what the TANDem project will do is three things: One, we're going to make a self-report version of the checklist, so that you either as a parent or caregiver or an individual that lives at TSC can fill it in yourself. Two-then we're going to put it into an app so that you can download an app and fill it in on the app. Three-And then we are going to create an expert group of people, consensus guidelines for treatment, next steps interventions for all these seven clusters of TAND difficulties. And then we're going to build them into the app so that when you sit down and you fill in the app for yourself or for your son or daughter, and you click on it, it will show you your child’s cluster profile. And you can click on it and it'll tell you what you can do about your that specific type of manifestation. And it will also tell you what the clinicians and the physicians ought to be doing as the next steps for your TAND profile. The TANDem project is just starting. We will create a website. And as soon as there are updates, we will inform people like you and the TS Alliance and the TCI, etc. So, the people just follow the story and give us input into the progress of the project over the next four years. It’s funded for four years by a Belgian foundation. It's called the King Baudouin Foundation. And they have funded us basically to develop this app, to validate the app and we will use people in the US and different parts of the world to make sure that we have something that we think is a good product that can then be launched for anybody in the world to use towards the end of the project. So that's the idea. You can see it's very practical. And it's really about empowering families and people who live with TSC. Because we know we can't wait until you can get somebody who knows about TAND- we need to give you the tools. I also don't want everyone to think that TANDem will solve all the problems of TAND in the world, but I think it's the kind of next step that we're taking in the community with people in the community that I'm really excited about.” From Alexis: “Education is where my heart lies for kids with TAND or any other genetic disorder, autism, anything else of because there is none in South Africa. All the children get sent to a special needs school and they get cheated and it’s frustrating.” Thanks for listening and many many thanks to both Professor Petrus de Vries and Alexis Minnaar for being willing to engage in this important conversation and shed some light on the lived and learned experience of TSC & TAND. WE will be watching and waiting to hear more on the TANDem project as it develops. Find us at: https://tsctalks.com Professor Petrus de Vries’ links: University of Cape Town: http://www.psychiatry.uct.ac.za/psych/staff/petrus-de-vries Centre For Autism Research: http://www.cara.uct.ac.za/petrus-de-vries TANDem press release: https://www.tsalliance.org/international-tand-research-project-awarded-funding/ Professor de Vries discussing TANDem: https://www.facebook.com/watch/?v=699529333889383 Recent article: https://www.spectrumnews.org/opinion/viewpoint/offer-support-young-autistic-children-south-africa/ Instagram: https://www.instagram.com/profpetrusdevries/ TSC South Africa: https://www.facebook.com/TSSouthAfrica/ Alexis Minnaar links: Blog: http://theycallmetsc.blogspot.com/ Facebook: https://www.facebook.com/alexisbilyard Living with TSC Facebook: https://www.facebook.com/theycallmetsc/ Instagram: https://www.instagram.com/they_call_me_tsc/ Previous podcasts on TSC Talks: https://www.spreaker.com/episode/18952329 and https://www.spreaker.com/episode/19010713

In this episode, we are joined by Professor Petrus de Vries, Sue Struengmann Professor of Child & Adolescent Psychiatry, Academic Head: Child & Adolescent Psychiatry, University of Cape Town, South Africa and Alexis Minnaar, English and Geography tutor at DawnCroft Alexis was diagnosed with Tuberous Sclerosis Complex, at the age of two. Prof. de Vries and Alexis graciously joined me to engage in a discussion on TAND, a phrase coined by Professor de Vries himself, which is an acronym for Tuberous Sclerosis Associated Neuropsychiatric Disorders and its one of the most challenging aspects of managing a TSC diagnosis and is a clinical manifestation of TSC, along with the other manifestations.Recently, Professor de Vries’ along with Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) were awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation for the TANDem project, which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The two-part project will first focus on the development of a self-report TAND checklist and identification smartphone app, to measure how people are affected by TAND. The second part of the study will investigate the best ways to treat TAND, including agreement on suitable clinical guidelines for TAND. Following this work in identifying and treating TAND, the TANDem Project will help to prepare a global team of TAND researchers to raise awareness and lead future research into TAND.Bringing both Alexis and Professor de Vries together to discuss their lived experiences with TAND in a Q & A session to bring to light the perspective of patient, doctor and a parent, to hash out the very different experiences. Professor de Vries coined the term TAND when in need of a succinct way to sum up the grouping of symptoms in a way that is easier for families also to talk to others about.“It can be easier to say; “I have, or my child has epilepsy or I've got something on my skin or got a kidney thing” than to talk about anxiety, about mental health issues and about learning issues and about all sorts of stuff like that. So, the journey to share often takes even longer for people about those kinds of things. And that's why it was so important for us to find a way of building a kind of a language around TAND. And to give the message, the simple message to people is that TAND is as much part of tuberous sclerosis complex as all the other things are. And therefore, it's not something to be ashamed about or shy about or embarrassed about. This is something that we need to know about them that we can do something about. And so that really is, you know, you you're talking about how do we how do we put down on a level playing field with all the other things, it's just as important and just the same as all these physical health problems that people have learned to talk about and have learned to treat in a better way. And so for many decades, very little research was done on behavior and psychiatry and mental health. It was, in 2012, when we had the consensus conference in the US to revise the diagnostic criteria and to revise the treatment guidelines that we the neuro psychiatry group that said, What? We've been trying to tell people to do these things, and nobody has been doing anything. What can we do to make it simple, so that people might start to listen to us? And the one thing we realized was, we've been talking about know, you have to think about the behavioral issues and the psychiatric issues and the academic issues and the intellectual issues and the psychosocial issues. And you know, by the time I said that whole sentence, people aren't listening to me anymore. And so that was why we decided we needed to come up with a simple term that puts all these things together. And that was the birth of the word TAND, which stands as you know, for TSC, associated neuro psychiatric disorders across all those different levels. We wanted a simple word that you and I can talk about TAND in one word, and then we can start to break it up, rather than to talk about all these fuzzy words that in a psychiatrist often like to talk about, that nobody follows. Right? So that was really the reason to give us that you can talk about it.”Alexis shares her own lived experience with TAND as well; “(my mother) She said I was having temper tantrums at school starting at about age seven. And she actually got to a point where she had to speak to my doctor say, look, you know, is it the TSC that's causing this or is it anger, or is it discipline issues? Or, you know, how do I deal with this? And so, my pediatric neurologist, her advice at the time was-there's no excuse for bad behavior. So, my mom had to put me on a strict discipline, freedom within boundaries sort of routine. I had strict routines in terms of schooling. Whether I was homeschooled or not, you know, you wake up at seven, you started school at eight, you work 'til two. And after that, you could do what you wanted. You took your medicine at seven, you know, they were they were structured systems in place so that I didn't have an excuse, and it's been very helpful. I did go through the TAND checklist last night, actually. And I kind of giggled because I realized I do kind of struggle to in terms of organization, I think you called it executive functioning”I am personally passionate about TAND because of the impact it had on our entire family. There tends to be a ripple effect when dealing with a lot of dysregulated and unpredictable behavior on top of seizures for long time periods and the whole family develops dysfunctional ways of coping. So when I heard Professor de Vries talk about TAND, first on YouTube and then in person at the World TSC Conference in 2017 in Dallas, the entire history of our life with TSC started to make more sense. More regarding the TANDem project; “And so what the TANDem project will do is three things: One, we're going to make a self-report version of the checklist, so that you either as a parent or caregiver or an individual that lives at TSC can fill it in yourself. Two-then we're going to put it into an app so that you can download an app and fill it in on the app. Three-And then we are going to create an expert group of people, consensus guidelines for treatment, next steps interventions for all these seven clusters of TAND difficulties. And then we're going to build them into the app so that when you sit down and you fill in the app for yourself or for your son or daughter, and you click on it, it will show you your child’s cluster profile. And you can click on it and it'll tell you what you can do about your that specific type of manifestation. And it will also tell you what the clinicians and the physicians ought to be doing as the next steps for your TAND profile. The TANDem project is just starting. We will create a website. And as soon as there are updates, we will inform people like you and the TS Alliance and the TCI, etc. So, the people just follow the story and give us input into the progress of the project over the next four years. It’s funded for four years by a Belgian foundation. It's called the King Baudouin Foundation. And they have funded us basically to develop this app, to validate the app and we will use people in the US and different parts of the world to make sure that we have something that we think is a good product that can then be launched for anybody in the world to use towards the end of the project. So that's the idea. You can see it's very practical. And it's really about empowering families and people who live with TSC. Because we know we can't wait until you can get somebody who knows about TAND- we need to give you the tools. I also don't want everyone to think that TANDem will solve all the problems of TAND in the world, but I think it's the kind of next step that we're taking in the community with people in the community that I'm really excited about.”From Alexis: “Education is where my heart lies for kids with TAND or any other genetic disorder, autism, anything else of because there is none in South Africa. All the children get sent to a special needs school and they get cheated and it’s frustrating.”Thanks for listening and many many thanks to both Professor Petrus de Vries and Alexis Minnaar for being willing to engage in this important conversation and shed some light on the lived and learned experience of TSC & TAND. WE will be watching and waiting to hear more on the TANDem project as it develops. Find us at: https://tsctalks.com Professor Petrus de Vries’ links:University of Cape Town: http://www.psychiatry.uct.ac.za/psych/staff/petrus-de-vriesCentre For Autism Research: http://www.cara.uct.ac.za/petrus-de-vriesTANDem press release: https://www.tsalliance.org/international-tand-research-project-awarded-funding/Professor de Vries discussing TANDem: https://www.facebook.com/watch/?v=699529333889383Recent article: https://www.spectrumnews.org/opinion/viewpoint/offer-support-young-autistic-children-south-africa/Instagram: https://www.instagram.com/profpetrusdevries/TSC South Africa: https://www.facebook.com/TSSouthAfrica/Alexis Minnaar links: Blog: http://theycallmetsc.blogspot.com/Facebook: https://www.facebook.com/alexisbilyardLiving with TSC Facebook: https://www.facebook.com/theycallmetsc/Instagram: https://www.instagram.com/they_call_me_tsc/Previous podcasts on TSC Talks: https://www.spreaker.com/episode/18952329 and https://www.spreaker.com/episode/19010713

In the eighth episode of TSC Now, host Dan Klein catches up with TS Alliance partners at the annual American Epilepsy Society Meeting (AES), the largest gathering on epilepsy in the world, which was held December 6-10 in Baltimore. Seizures remain one of the most common neurological features of TSC, occurring in 85% of individuals … Continue reading Episode 8: Excerpts from AES and the Current State of Epilepsy Research →

Shelly Meitzler is an amazing, inspiring individual who's life took a challenging turn when she received a diagnosis of TSC in her oldest daughter in August 2001. Starting out in the ER with her seizing baby, Shelly and her husband had to weather the false accusations of shaken baby syndrome by hospital staff before receiving an official diagnosis. From here, she mentions that life as she knew it, was forever changed. Again in 2014, she received another TSC diagnosis in her young son. We discuss the intricate challenges of having 2 individuals affected by TSC, and the varying impact due to the increase in understanding, better treatments, and knowledge in the space of time between diagnosis of her oldest daughter and younger son. She also has another daughter who is not affected by TSC. Shelly shares her unfiltered experience dealing with the intensity of managing the needs of her children & juggling a career, and how this impacted her mental health. She took a leap of faith, leave her former career so she'd be able to devote more time to her family and TSC case management. "In January 2017, Shelly joined the team on as National Walks Coordinator; in September 2017, she joined the staff full time. Shelly has been involved with the TS Alliance for the past decade, including serving as both Community Alliance Chair and Step Forward to Cure TSC Chair in Delaware/Lehigh Valley. Last year, she delivered an inspirational speech at the TS Alliance Congressional Briefing on Capitol Hill chronicling her journey as a TSC mom to Ashlin and Mason. She is grateful to have an extended, supportive family that has helped navigate the journey of TSC and allowed her to be involved on various levels in the community. Shelly’s story has provided hope as ongoing TSC research has offered new insight over the last decade and solidified her determination to continue to advocate, educate, and raise vital research dollars for all those impacted by TSC. In her free time, she enjoys spending time with family and friends, laughing, enjoying life, and the occasional hockey game with her husband, Matt." (tsalliance.org) There is not much that rattles this powerful advocate who above all else is devoted to her family, friends and work at the TS Alliance, improving the quality of life of those affected and working to discover a cure. In her own words; "I'm spontaneous, fun, love to be around people, love to make me people laugh. Nothing compares to being a MOM....love my kids more than anything. And will give everything but UP, to find a cure for Tuberous Sclerosis for Ashlin, Mason, and all those affected with TS!" Keep on keeping on Shelly! And thanks for the inspiration. Shelly's links: https://www.tsalliance.org/about-us/our-team/ https://www.facebook.com/shelly.richards.313 https://cdmrp.army.mil/cwg/stories/2017/shelly_meitzler_profile https://www.linkedin.com › shelly-meitzler-054877160 https://twitter.com/momof2withtsc https://www.readingeagle.com/life/article/wyomissing-mom-a-tireless-advocate-for-her-children https://www.youtube.com/watch?v=V9IvFxonu6M

Shelly Meitzler is an amazing, inspiring individual who's life took a challenging turn when she received a diagnosis of TSC in her oldest daughter in August 2001. Starting out in the ER with her seizing baby, Shelly and her husband had to weather the false accusations of shaken baby syndrome by hospital staff before receiving an official diagnosis. From here, she mentions that life as she knew it, was forever changed. Again in 2014, she received another TSC diagnosis in her young son. We discuss the intricate challenges of having 2 individuals affected by TSC, and the varying impact due to the increase in understanding, better treatments, and knowledge in the space of time between diagnosis of her oldest daughter and younger son. She also has another daughter who is not affected by TSC. Shelly shares her unfiltered experience dealing with the intensity of managing the needs of her children & juggling a career, and how this impacted her mental health. She took a leap of faith, leave her former career so she'd be able to devote more time to her family and TSC case management. "In January 2017, Shelly joined the team on as National Walks Coordinator; in September 2017, she joined the staff full time. Shelly has been involved with the TS Alliance for the past decade, including serving as both Community Alliance Chair and Step Forward to Cure TSC Chair in Delaware/Lehigh Valley. Last year, she delivered an inspirational speech at the TS Alliance Congressional Briefing on Capitol Hill chronicling her journey as a TSC mom to Ashlin and Mason. She is grateful to have an extended, supportive family that has helped navigate the journey of TSC and allowed her to be involved on various levels in the community. Shelly’s story has provided hope as ongoing TSC research has offered new insight over the last decade and solidified her determination to continue to advocate, educate, and raise vital research dollars for all those impacted by TSC. In her free time, she enjoys spending time with family and friends, laughing, enjoying life, and the occasional hockey game with her husband, Matt." (tsalliance.org) There is not much that rattles this powerful advocate who above all else is devoted to her family, friends and work at the TS Alliance, improving the quality of life of those affected and working to discover a cure. In her own words; "I'm spontaneous, fun, love to be around people, love to make me people laugh. Nothing compares to being a MOM....love my kids more than anything. And will give everything but UP, to find a cure for Tuberous Sclerosis for Ashlin, Mason, and all those affected with TS!" Keep on keeping on Shelly! And thanks for the inspiration. Shelly's links: https://www.tsalliance.org/about-us/our-team/https://www.facebook.com/shelly.richards.313https://cdmrp.army.mil/cwg/stories/2017/shelly_meitzler_profilehttps://www.linkedin.com › shelly-meitzler-054877160https://twitter.com/momof2withtschttps://www.readingeagle.com/life/article/wyomissing-mom-a-tireless-advocate-for-her-childrenhttps://www.youtube.com/watch?v=V9IvFxonu6M

In Part 2 with Alexis Minnaar, we go into further detail on the realities of growing up with TSC. She shares more about relationships, mentioning the fact that she has TSC with potential partners, and how this news was received. Meeting her husband, dealing with people's questions related to facial manifestations over the years, how others react when she shares information on having TSC, and how important finding common ground has been with other individuals and/or families dealing with epilepsy and/or TSC. We discuss her attendance at "TSC Indaba" in November 2018, an informal TSC gathering of families and individuals who live with Tuberous Sclerosis Complex coordinated in part by Professor Petrus de Vries, the TAND expert from South Africa and how powerful it is to connect with others in her country dealing with similar issues. Alexis shares her vision for a comprehensive program for those living with epilepsy and TSC , the need to reach young people, teenagers and offer support, validation and hope. She emphasizes throughout, that while it's incredibly difficult to come to terms with acceptance of having a condition such as TSC that impacts every area of her life, it is possible to manage and have a good quality of life. Despite some teenage rebellion which she outlines, she has fully come around to acceptance;"What got through to me, I think was the idea that you can have fun, but in moderation". Alexis wants all to know that despite the often grim information given to families upon receiving a diagnosis, not to let any of this information be the final word. "I think we need to try and come together and put up a system that educates teenagers, in particular, on their condition as well as parents....where you say, your child is not in primary school anymore- they are trying to find their own identity. Yes, how you can help them, give them these alternative safe options, but don't control" . A brilliant take away from this young lady who is passionate about using her voice to affect change and raise awareness in South Africa and beyond!

In Part 2 with Alexis Minnaar, we go into further detail on the realities of growing up with TSC. She shares more about relationships, mentioning the fact that she has TSC with potential partners, and how this news was received. Meeting her husband, dealing with people's questions related to facial manifestations over the years, how others react when she shares information on having TSC, and how important finding common ground has been with other individuals and/or families dealing with epilepsy and/or TSC. We discuss her attendance at "TSC Indaba" in November 2018, an informal TSC gathering of families and individuals who live with Tuberous Sclerosis Complex coordinated in part by Professor Petrus de Vries, the TAND expert from South Africa and how powerful it is to connect with others in her country dealing with similar issues. Alexis shares her vision for a comprehensive program for those living with epilepsy and TSC , the need to reach young people, teenagers and offer support, validation and hope. She emphasizes throughout, that while it's incredibly difficult to come to terms with acceptance of having a condition such as TSC that impacts every area of her life, it is possible to manage and have a good quality of life. Despite some teenage rebellion which she outlines, she has fully come around to acceptance;"What got through to me, I think was the idea that you can have fun, but in moderation". Alexis wants all to know that despite the often grim information given to families upon receiving a diagnosis, not to let any of this information be the final word. "I think we need to try and come together and put up a system that educates teenagers, in particular, on their condition as well as parents....where you say, your child is not in primary school anymore- they are trying to find their own identity. Yes, how you can help them, give them these alternative safe options, but don't control" . A brilliant take away from this young lady who is passionate about using her voice to affect change and raise awareness in South Africa and beyond!

In the fourth episode of TSC Now, host Dan Klein talks to Lilian Ansari, MS, Special Needs Advocate, Co-Chair of the TS Alliance of Northern California and Education Parent Mentor. They discuss why she volunteered as an Education Parent Mentor, what types of challenges kids with TSC face in the classroom, and what resources and benefits … Continue reading Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School →

Mark Martin is an Adult & Parent living with TSC. He also is the Adult Regional Coordinator of 6 States for the TS Alliance, & was a past Volunteer of the Year. He started a Facebook group for TSC Dads, has worked as an ER Tech, and is an accomplished musician. There is never a dull moment for Mark! He's a true influencer across the community as his perspective as Adult with TSC AND having a son w/TSC gives him a broad perspective and further fires his passion for connecting as many people as possible with resources, information & friendship in the TSC grassroots community. In this episode, Mark shares his lived experience with TSC from the early days when he did not have a diagnosis, and family members thought he was "making seizures up for attention". His overwhelming desperation led him to attempt to take his own life. Mark's resilience is incredible and despite many challenges to his mental and physical health over the years, he remains steadfastly committed to the TSC community, his family, his children, and wife. He was not officially diagnosed with TSC until he was hospitalized for a blood clot in his lungs and everything he'd been through in his past started to make sense. From that moment, purpose defined, Mark committed himself to raise awareness of this condition and got involved with the TS Alliance. He discusses much of his experience over the years working in particular with the adult TSC community as an adult regional coordinator of 6 states, attending conferences, speaking at local colleges, becoming a TS Clinic Ambassador and more. He's been a ER Tech, group home manager, started a Facebook group for Dads with TSC and still holds regular Adult Topic phone calls and meetings with people across the country. He also shares how his love for singing and songwriting has been a refuge along with spending precious time with his wife, son, and daughter. He shares some glimpses of his interactions with influencing doctors and other professionals, traveling across the country to attend conferences to network and further awareness and connection and is in the midst of writing a book about his vast experiences over the years and how his strong faith has pulled him through. In Mark's words, "take the high road, just try to keep things in perspective. ask God for discernment, and maybe an extra date night for yourself or with your spouse but it can be done if you choose to drop the selfishness and sometimes that's a tough gig"

Mark Martin is an Adult & Parent living with TSC. He also is the Adult Regional Coordinator of 6 States for the TS Alliance, & was a past Volunteer of the Year. He started a Facebook group for TSC Dads, has worked as an ER Tech, and is an accomplished musician. There is never a dull moment for Mark! He's a true influencer across the community as his perspective as Adult with TSC AND having a son w/TSC gives him a broad perspective and further fires his passion for connecting as many people as possible with resources, information & friendship in the TSC grassroots community. In this episode, Mark shares his lived experience with TSC from the early days when he did not have a diagnosis, and family members thought he was "making seizures up for attention". His overwhelming desperation led him to attempt to take his own life. Mark's resilience is incredible and despite many challenges to his mental and physical health over the years, he remains steadfastly committed to the TSC community, his family, his children, and wife. He was not officially diagnosed with TSC until he was hospitalized for a blood clot in his lungs and everything he'd been through in his past started to make sense. From that moment, purpose defined, Mark committed himself to raise awareness of this condition and got involved with the TS Alliance. He discusses much of his experience over the years working in particular with the adult TSC community as an adult regional coordinator of 6 states, attending conferences, speaking at local colleges, becoming a TS Clinic Ambassador and more. He's been a ER Tech, group home manager, started a Facebook group for Dads with TSC and still holds regular Adult Topic phone calls and meetings with people across the country. He also shares how his love for singing and songwriting has been a refuge along with spending precious time with his wife, son, and daughter. He shares some glimpses of his interactions with influencing doctors and other professionals, traveling across the country to attend conferences to network and further awareness and connection and is in the midst of writing a book about his vast experiences over the years and how his strong faith has pulled him through. In Mark's words, "take the high road, just try to keep things in perspective. ask God for discernment, and maybe an extra date night for yourself or with your spouse but it can be done if you choose to drop the selfishness and sometimes that's a tough gig"

Rob Grandia is an adult with TSC and father of 3 children affected by TSC. In this episode, he gives an inside look at not only receiving a diagnosis of TSC in his children but also finding out as an adult that he also is affected. We discuss the various manifestations experienced by his children throughout these last 18 years, and how the family was able to find adequate treatment locally. From partial complex seizures as the diagnosing symptom in his oldest daughter to reducing seizures from 80-90 per day to 1-2 per week on an modified Atkins diet for his son, this family has seen a lot. From the early days where seizure management was the primary goal to current day dealing with behavior challenges, what is evident is the overriding commitment and devotion of Rob and Shannon to providing stability, humor and mutual support for each other and their children. Steadfastly devoted to each other as well as the cause of TSC awareness, research and finding a cure, they have found ways to cope, find joy & humor and help others throughout this journey. Rob's work as a board member and regional coordinator with the TS Alliance has provided much purpose and passion as he makes it a priority to be available to help as many other Dads, individuals and families as possible. In his words, "I am a husband and father to 3 amazing kids. Tuberous Sclerosis plays a huge role in my life and I am advocate for research and development to find a cure. Mostly, I love my family." I personally am incredibly inspired by Rob, Shannon and their entire family as they continue to rise up to each new challenge, despite facing grief and loss, push forward and hope that they can use their lived expertise to provide hope & inspiration daily to as many people as possible.

Rob Grandia is an adult with TSC and father of 3 children affected by TSC. In this episode, he gives an inside look at not only receiving a diagnosis of TSC in his children but also finding out as an adult that he also is affected. We discuss the various manifestations experienced by his children throughout these last 18 years, and how the family was able to find adequate treatment locally. From partial complex seizures as the diagnosing symptom in his oldest daughter to reducing seizures from 80-90 per day to 1-2 per week on an modified Atkins diet for his son, this family has seen a lot. From the early days where seizure management was the primary goal to current day dealing with behavior challenges, what is evident is the overriding commitment and devotion of Rob and Shannon to providing stability, humor and mutual support for each other and their children. Steadfastly devoted to each other as well as the cause of TSC awareness, research and finding a cure, they have found ways to cope, find joy & humor and help others throughout this journey. Rob's work as a board member and regional coordinator with the TS Alliance has provided much purpose and passion as he makes it a priority to be available to help as many other Dads, individuals and families as possible. In his words, "I am a husband and father to 3 amazing kids. Tuberous Sclerosis plays a huge role in my life and I am advocate for research and development to find a cure. Mostly, I love my family." I personally am incredibly inspired by Rob, Shannon and their entire family as they continue to rise up to each new challenge, despite facing grief and loss, push forward and hope that they can use their lived expertise to provide hope & inspiration daily to as many people as possible.

Jaye Isham, VP of Communication Strategy @ TS Alliance, and beloved TSC community member shares from his work and lived experience in Part 2 of this 2 part episode. A quote that says it all: "Yeah, you know, and I'm very lucky that I allow myself to feel the pain and the heartache and all of those things from the families. I mean, I am never going to truly understand, you know what it's like to have a child with TSC or to have it myself but I have so much empathy, and it's made me such a much better person." That's Jaye, in a nutshell, and his empathy drives his work. He fleshes out his experience here a bit more, what's going on at the TS Alliance with the research business plan, his experience working with docs, researchers, parents over the years, his recent visit to Toronto for business & pleasure, expanding national & global outreach and challenges in this area, the Facebook discussion group and how that's changed over the years, his 4 (yes I said 4) mini-pinchers, his love of music and work as a musician and much more! Take it away Jaye :)

Jaye Isham, VP of Communication Strategy @ TS Alliance, and beloved TSC community member shares from his work and lived experience in Part 2 of this 2 part episode. A quote that says it all: "Yeah, you know, and I'm very lucky that I allow myself to feel the pain and the heartache and all of those things from the families. I mean, I am never going to truly understand, you know what it's like to have a child with TSC or to have it myself but I have so much empathy, and it's made me such a much better person." That's Jaye, in a nutshell, and his empathy drives his work. He fleshes out his experience here a bit more, what's going on at the TS Alliance with the research business plan, his experience working with docs, researchers, parents over the years, his recent visit to Toronto for business & pleasure, expanding national & global outreach and challenges in this area, the Facebook discussion group and how that's changed over the years, his 4 (yes I said 4) mini-pinchers, his love of music and work as a musician and much more! Take it away Jaye :)

Jaye Isham, VP of Communication Strategy @ TS Alliance, and beloved TSC community member shares from the annals of his lived experience in Part 1 of this 2 part episode you don't want to miss. In his words, "While I want to give your listeners a little insight into what I do, it's more important for them to realize so much hope is truly on the horizon." We cover Jaye's experience of the changing landscape of social media over the years. In a nutshell, Jaye is responsible "for the outward look, the brands, how we communicate, how we present information, in all kinds of formats". We turn back the clock as I ask Jaye to outline his early career. He graduated w/a degree in communications & a minor in marketing from Texas State University and got a job with a large healthcare system in TX. right out of college. From there he worked for the MS Society in Houston. After relocating to the DC area, he decided to try his hand in an ad agency working on healthcare accounts. After realizing the for-profit ad agency setting was not for him, he responded to a printed help wanted ad in a local paper to work at the TS Alliance to which he responded and the rest is history. His first big project at the Alliance was to work on the website which has been carefully and painstakingly developed over the years into the excellent web platform chock full of resources, it is today. We discuss the many other projects, that he's implemented, facilitated, how the online communities have changed and shifted over the years, handling feedback and criticism from constituents, and continually remaining open to input from all sectors the diverse TSC community. What started as a job for Jaye, soon became more of a calling. His love & devotion to all impacted by a TSC diagnosis is a constant and the impact he's had on our growing and global community is profound. Jaye is also a talented musician and has provided TSC Talks with some unique intro & outro guitar music titled; "Rio Rancho Riffing". We will make the full mp3 sample available for download on our website https://tsctalks.com .

Jaye Isham, VP of Communication Strategy @ TS Alliance, and beloved TSC community member shares from the annals of his lived experience in Part 1 of this 2 part episode you don't want to miss. In his words, "While I want to give your listeners a little insight into what I do, it's more important for them to realize so much hope is truly on the horizon." We cover Jaye's experience of the changing landscape of social media over the years. In a nutshell, Jaye is responsible "for the outward look, the brands, how we communicate, how we present information, in all kinds of formats". We turn back the clock as I ask Jaye to outline his early career. He graduated w/a degree in communications & a minor in marketing from Texas State University and got a job with a large healthcare system in TX. right out of college. From there he worked for the MS Society in Houston. After relocating to the DC area, he decided to try his hand in an ad agency working on healthcare accounts. After realizing the for-profit ad agency setting was not for him, he responded to a printed help wanted ad in a local paper to work at the TS Alliance to which he responded and the rest is history. His first big project at the Alliance was to work on the website which has been carefully and painstakingly developed over the years into the excellent web platform chock full of resources, it is today. We discuss the many other projects, that he's implemented, facilitated, how the online communities have changed and shifted over the years, handling feedback and criticism from constituents, and continually remaining open to input from all sectors the diverse TSC community. What started as a job for Jaye, soon became more of a calling. His love & devotion to all impacted by a TSC diagnosis is a constant and the impact he's had on our growing and global community is profound. Jaye is also a talented musician and has provided TSC Talks with some unique intro & outro guitar music titled; "Rio Rancho Riffing". We will make the full mp3 sample available for download on our website https://tsctalks.com .

In this episode, I tried something different! I used pieces of pertinent audio from 6 past guests, some has been released in previous episodes and some content is from the cutting room floor. I kick it off with gratitude and HUGE thanks to the TSC Community, and the Power of TSC Moms that so inspired this podcast. We are bringing to light our variable issues & challenges managing manifestations of TSC, IDD & Autism. It is almost always complicated, lonely and can be overwhelming at times, yet risking vulnerability to share from our daily lives, has played a role in affecting change. Consider the TAND initiative, the FB TAND group, the recent Trauma 101 webinar, TSC Now podcast, and more have come to fruition over the course of the past year. Listen to these women, all mothers, all impacted differently by TSC -with or without IDD & Autism, but yet still much commonality. It's tough, it's ongoing but we can do it. However one is impacted by TSC, IDD and/or Autism, our lived & learned experience is of value and is worth discussing out loud. These audio clips center around parent/caregiver impact, frustrations with social media, loss of community connection, TAND & our own mental health, and misunderstanding and misinterpretation of family, friends & society at large. Dena Hook wraps it up by letting us know what's happening at the TS Alliance in relation to TAND, etc. Guests in order of audio content are as follows; Caroline Clyborne, Rebecca Thereault, Adriana Piltz, Chelsea Holman, Debora Moritz & wrapping it up with Dena Hook.

In this episode, I tried something different! I used pieces of pertinent audio from 6 past guests, some has been released in previous episodes and some content is from the cutting room floor. I kick it off with gratitude and HUGE thanks to the TSC Community, and the Power of TSC Moms that so inspired this podcast. We are bringing to light our variable issues & challenges managing manifestations of TSC, IDD & Autism. It is almost always complicated, lonely and can be overwhelming at times, yet risking vulnerability to share from our daily lives, has played a role in affecting change. Consider the TAND initiative, the FB TAND group, the recent Trauma 101 webinar, TSC Now podcast, and more have come to fruition over the course of the past year. Listen to these women, all mothers, all impacted differently by TSC -with or without IDD & Autism, but yet still much commonality. It's tough, it's ongoing but we can do it. However one is impacted by TSC, IDD and/or Autism, our lived & learned experience is of value and is worth discussing out loud. These audio clips center around parent/caregiver impact, frustrations with social media, loss of community connection, TAND & our own mental health, and misunderstanding and misinterpretation of family, friends & society at large. Dena Hook wraps it up by letting us know what's happening at the TS Alliance in relation to TAND, etc. Guests in order of audio content are as follows; Caroline Clyborne, Rebecca Thereault, Adriana Piltz, Chelsea Holman, Debora Moritz & wrapping it up with Dena Hook.

In Part 3 of this three-part series with Dena Hook, VP of Support Services at the TS Alliance, what I want to highlight in this description is our discussion of Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND). "TAND describes the interrelated functional and clinical manifestations of brain dysfunction in TSC, including aggressive behaviors, autism spectrum disorder (ASD), intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties". We discuss the early challenges involved getting doctors to recognize TAND as a manifestation of TSC . For many of us, TAND has been THEE most challenging aspect of TSC care & management with which to contend. Thanks in part to Dena's efforts, we now have a lot of information available to help. The TAND Checklist, which is a helpful screening tool for professionals and "TAND in Education", written by Dena for educators and providing the necessary knowledge & wisdom gleaned from research and her 30 yrs experience working w/school systems. We now have a TAND research project called "The TANDem Project" which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment". The impact of Dena Hook's powerful advocacy and fierce devotion on behalf of ALL impacted by a TSC diagnosis is beyond compare and her humble, tireless work has improved the lives of legions of individuals, families who must; wrangle the chaos that TSC care & mgmt can present. The gratitude of the highest order to Dena Hook and her ineffable contribution to improving the lives of those living with and lessening the impact of this complicated and often devastating medical disorder. (Uplifting Funk Pop Instrumental by taiiga | https://soundcloud.com/paavoilves Music promoted by https://www.free-stock-music.com Creative Commons Attribution-ShareAlike 3.0 Unported https://creativecommons.org/licenses/by-sa/3.0/deed.en_US)

In Part 3 of this three-part series with Dena Hook, VP of Support Services at the TS Alliance, what I want to highlight in this description is our discussion of Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND). "TAND describes the interrelated functional and clinical manifestations of brain dysfunction in TSC, including aggressive behaviors, autism spectrum disorder (ASD), intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties". We discuss the early challenges involved getting doctors to recognize TAND as a manifestation of TSC . For many of us, TAND has been THEE most challenging aspect of TSC care & management with which to contend. Thanks in part to Dena's efforts, we now have a lot of information available to help. The TAND Checklist, which is a helpful screening tool for professionals and "TAND in Education", written by Dena for educators and providing the necessary knowledge & wisdom gleaned from research and her 30 yrs experience working w/school systems. We now have a TAND research project called "The TANDem Project" which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment". The impact of Dena Hook's powerful advocacy and fierce devotion on behalf of ALL impacted by a TSC diagnosis is beyond compare and her humble, tireless work has improved the lives of legions of individuals, families who must; wrangle the chaos that TSC care & mgmt can present. The gratitude of the highest order to Dena Hook and her ineffable contribution to improving the lives of those living with and lessening the impact of this complicated and often devastating medical disorder. (Uplifting Funk Pop Instrumental by taiiga | https://soundcloud.com/paavoilvesMusic promoted by https://www.free-stock-music.comCreative Commons Attribution-ShareAlike 3.0 Unportedhttps://creativecommons.org/licenses/by-sa/3.0/deed.en_US)

In Part 2, Dena discusses crossing paths with Kari Rosbeck (TS Alliance President) and how she got her first position with the TS Alliance, moved to DC and never looked back. She outlines the development of the volunteer programs she initiated, and established, her process in recruiting and retaining a large volunteer network and the importance throughout of building relationships. Dena is and has been a lifeline for so many in the TSC community and her ability to continue to recruit high caliber individuals at the volunteer level is remarkable and should serve as an example for any other non profit looking for a compassionate, sustainable model for recruiting, building, training and mobilizing an exceptional volunteer team consistently, year after year. Her work doing so as VP of Support Services has supported the many progressive efforts of this award-winning nonprofit charity to meet and exceed the needs of its varied & complex constituent populations and has had a profound impact on the quality of life of those living with this chronic medical disorder, as well as their entire families and networks. Stay tuned for Part 3! (music credit: Nomadic Dawn by Alexander Nakarada | https://www.serpentsoundstudios.com Music promoted by https://www.free-stock-music.com Attribution 4.0 International (CC BY 4.0) https://creativecommons.org/licenses/by/4.0/)

In Part 2, Dena discusses crossing paths with Kari Rosbeck (TS Alliance President) and how she got her first position with the TS Alliance, moved to DC and never looked back. She outlines the development of the volunteer programs she initiated, and established, her process in recruiting and retaining a large volunteer network and the importance throughout of building relationships. Dena is and has been a lifeline for so many in the TSC community and her ability to continue to recruit high caliber individuals at the volunteer level is remarkable and should serve as an example for any other non profit looking for a compassionate, sustainable model for recruiting, building, training and mobilizing an exceptional volunteer team consistently, year after year. Her work doing so as VP of Support Services has supported the many progressive efforts of this award-winning nonprofit charity to meet and exceed the needs of its varied & complex constituent populations and has had a profound impact on the quality of life of those living with this chronic medical disorder, as well as their entire families and networks. Stay tuned for Part 3! (music credit: Nomadic Dawn by Alexander Nakarada | https://www.serpentsoundstudios.comMusic promoted by https://www.free-stock-music.comAttribution 4.0 International (CC BY 4.0)https://creativecommons.org/licenses/by/4.0/)

The TSC world famous & beloved Dena Hook, Vice President of Support Services at the TS Alliance comes on the podcast to discuss, well, a lot. This is Part 1 of our conversation and Dena walks us through her history right up until she started working at the TS Alliance in 2007. Dena shares her experience advocating for her son with severe dyslexia in the early years of special needs legislation and how that inspired & launched her career in advocacy. She describes that it was a time when being "in the building" for a kid with special needs, was about as much support as was given. Dena was Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years training educational advocates throughout the country. She worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act in 1997. A published author through Incentive Publication, she wrote: “Success with IEPs” and “An IEP Writing Tool” for teachers and school administrators. During her time as CEO of Family and Children First, she ran Part C of the Individuals with Disabilities Education Act Early Childhood Program, Truancy Mediation, and Strengthening Families a Mental Health and Drug Addiction Program for Marion County in Ohio. She is certified as Special Education Mediator through the Juvenile Justice Center of Atlanta and as a Truancy Mediator through the Ohio Supreme Court. On a personal level, Dena also talks about leaving her job at PACER & working with OSEP to return to Ohio to aid her mother and how despite leaving an esteemed position, she was able to use her experience as a parent, advocate & then administrator to rise once again to leadership at Family & Children First in her home state of Ohio. Buckle up, there's a lot here and more on the way! (music credit: https://www.purple-planet.com)

The TSC world famous & beloved Dena Hook, Vice President of Support Services at the TS Alliance comes on the podcast to discuss, well, a lot. This is Part 1 of our conversation and Dena walks us through her history right up until she started working at the TS Alliance in 2007. Dena shares her experience advocating for her son with severe dyslexia in the early years of special needs legislation and how that inspired & launched her career in advocacy. She describes that it was a time when being "in the building" for a kid with special needs, was about as much support as was given. Dena was Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years training educational advocates throughout the country. She worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act in 1997. A published author through Incentive Publication, she wrote: “Success with IEPs” and “An IEP Writing Tool” for teachers and school administrators. During her time as CEO of Family and Children First, she ran Part C of the Individuals with Disabilities Education Act Early Childhood Program, Truancy Mediation, and Strengthening Families a Mental Health and Drug Addiction Program for Marion County in Ohio. She is certified as Special Education Mediator through the Juvenile Justice Center of Atlanta and as a Truancy Mediator through the Ohio Supreme Court. On a personal level, Dena also talks about leaving her job at PACER & working with OSEP to return to Ohio to aid her mother and how despite leaving an esteemed position, she was able to use her experience as a parent, advocate & then administrator to rise once again to leadership at Family & Children First in her home state of Ohio. Buckle up, there's a lot here and more on the way! (music credit: https://www.purple-planet.com)

My guest, Emilie Peters, hailing from Oklahoma, is a Junior Leader with the TS Alliance, co-facilitator for the new TSC Young Adult Connect Group, and just received her Associates Degree from Tulsa Community College. She gives a gripping personal account of her experience with a Tuberous Sclerosis Complex diagnosis from awareness of having the condition in 8th grade to current day. She narrates some painful experiences dealing with seizures, including one particularly heart-wrenching experience during a high school softball game. She discusses many of her experiences, such as not being able to get a driver's license, trying to find adequate TSC support and a TS Clinic, living with frequent bouts of anxiety, medication side effects, switching medications to attempt to get seizure control and increasing feelings of isolation and depression. The impact of living with a chronic disease such as TSC, and not having a peer network of any kind, even feeling disconnected from her own family were the motivating factors behind getting involved in the TSC community, first through her parents and their connections, but then on her own by attending the World TSC Conference, Marching on Capitol Hill and launching the Facebook group. Today she is much more content and accepting of her diagnosis and feels as if making the connections in the community made a huge difference. She is in a relationship with a young man also affected by TSC whom she met at a TS Alliance event, has received her Associates Degree and is looking forward to getting a job, participating in and watching sporting events and living her life. My hat is off to this young lady for summoning the inner courage and bravery to risk vulnerability and seek connection and how that has transformed her entire life. (intro music by www.bensound.com)

My guest, Emilie Peters, hailing from Oklahoma, is a Junior Leader with the TS Alliance, co-facilitator for the new TSC Young Adult Connect Group, and just received her Associates Degree from Tulsa Community College. She gives a gripping personal account of her experience with a Tuberous Sclerosis Complex diagnosis from awareness of having the condition in 8th grade to current day. She narrates some painful experiences dealing with seizures, including one particularly heart-wrenching experience during a high school softball game. She discusses many of her experiences, such as not being able to get a driver's license, trying to find adequate TSC support and a TS Clinic, living with frequent bouts of anxiety, medication side effects, switching medications to attempt to get seizure control and increasing feelings of isolation and depression. The impact of living with a chronic disease such as TSC, and not having a peer network of any kind, even feeling disconnected from her own family were the motivating factors behind getting involved in the TSC community, first through her parents and their connections, but then on her own by attending the World TSC Conference, Marching on Capitol Hill and launching the Facebook group. Today she is much more content and accepting of her diagnosis and feels as if making the connections in the community made a huge difference. She is in a relationship with a young man also affected by TSC whom she met at a TS Alliance event, has received her Associates Degree and is looking forward to getting a job, participating in and watching sporting events and living her life. My hat is off to this young lady for summoning the inner courage and bravery to risk vulnerability and seek connection and how that has transformed her entire life. (intro music by www.bensound.com)

In this final segment, Julie goes into detail discussing her son's progress once he became eligible through a waiver funded by the Louisiana Department of Health’s Office for Citizens with Developmental Disabilities. Julie was able to hire a Direct Support Professional of her own choosing to work one on one in the home, community, and more. Over time, her son was able to lessen the grip of a narrow focused interest/obsession with trains for which Julie and her family had gone to extremes in order to address. She gives a thorough look at the process of becoming eligible for this type of service, finding a good match and how through collaboration between herself, her son and this worker, hope for a better future has been reignited.

In this final segment, Julie goes into detail discussing her son's progress once he became eligible through a waiver funded by the Louisiana Department of Health’s Office for Citizens with Developmental Disabilities. Julie was able to hire a Direct Support Professional of her own choosing to work one on one in the home, community, and more. Over time, her son was able to lessen the grip of a narrow focused interest/obsession with trains for which Julie and her family had gone to extremes in order to address. She gives a thorough look at the process of becoming eligible for this type of service, finding a good match and how through collaboration between herself, her son and this worker, hope for a better future has been reignited.

In Part 1 of this series, Julie Comeaux begins to give an inside look at her experiences in the education system in Louisiana with her son that has TSC. She has attended multiple parent training events on IEP, 504, Transition, and SPED Law 101 and believes that parents can be educated to be the best voice possible for their children, sometimes, the only voice! Stay tuned for more detail on this rocky ride with misunderstanding, fear, and ignorance, in this case in the local school district, that we often encounter related to various behavioral manifestations of TSC, what can go wrong and how persistence and inner fortitude are necessary to affect change. (intro/outro music www.bensound.com)

In Part 1 of this series, Julie Comeaux begins to give an inside look at her experiences in the education system in Louisiana with her son that has TSC. She has attended multiple parent training events on IEP, 504, Transition, and SPED Law 101 and believes that parents can be educated to be the best voice possible for their children, sometimes, the only voice! Stay tuned for more detail on this rocky ride with misunderstanding, fear, and ignorance, in this case in the local school district, that we often encounter related to various behavioral manifestations of TSC, what can go wrong and how persistence and inner fortitude are necessary to affect change. (intro/outro music www.bensound.com)

Continuing our conversation from Part 1, Chelsea talks a bit about difficulties with the local school system, coping with stigma, mental health issues, seeking support, finding the moments and living them, rocking out to AC/DC, thriving with Thrive nutrition and more! (music by www.bensound.com)

Continuing our conversation from Part 1, Chelsea talks a bit about difficulties with the local school system, coping with stigma, mental health issues, seeking support, finding the moments and living them, rocking out to AC/DC, thriving with Thrive nutrition and more! (music by www.bensound.com)

My guest, Chelsea Holman, is a TSC Mom from Nevada. Impacted personally by TSC, having a son, and various other family members affected with the diagnosis, Chelsea gives a raw look at receiving a diagnosis later in life, managing and reigning in chaos with medications, diet issues, depression, judgments from outsiders, amazing resolution of kidney issues, using CBD oil, angiofibromas, doctor run around, and more. This is part 1 of a 2 part episode. Throughout, Chelsea shares from her heart and soul with honesty, compassion, much inner fortitude, and love. (intro music: https://www.bensound.com

My guest, Chelsea Holman, is a TSC Mom from Nevada. Impacted personally by TSC, having a son, and various other family members affected with the diagnosis, Chelsea gives a raw look at receiving a diagnosis later in life, managing and reigning in chaos with medications, diet issues, depression, judgments from outsiders, amazing resolution of kidney issues, using CBD oil, angiofibromas, doctor run around, and more. This is part 1 of a 2 part episode. Throughout, Chelsea shares from her heart and soul with honesty, compassion, much inner fortitude, and love. (intro music: https://www.bensound.com

Alex Skuby, Actor, Co Hosted the recent Comedy for A Cure Fundraiser for the TS Alliance and was kind enough to come on TSC Talks, share some laughs and give me the low down on life. He shares from his early years growing up in NJ, how he got into acting, by taking Acting 101 in college on a whim, falling in love with acting, it's therapeutic value, moving to Chicago in 1996 to pursue a career in acting, then moving to LA in 1998, landing some regular roles on TV series, particularly as Carrie's boss on King of Queens, the highs and lows of show business, his passion for live theater, dealing with challenging life events, family, parenting, "bad" habits, diet, exercise, meeting his lovely wife Mo' Collins, their connection with the TS Alliance, & Co-hosting Comedy For A Cure. We wrap it up with a brief discussion of his new podcast "Skuby Talk", the joys of podcasting and more! Music Credit, "Lucky Stars" www.woodywoodworth.com

Alex Skuby, Actor, Co Hosted the recent Comedy for A Cure Fundraiser for the TS Alliance and was kind enough to come on TSC Talks, share some laughs and give me the low down on life. He shares from his early years growing up in NJ, how he got into acting, by taking Acting 101 in college on a whim, falling in love with acting, it's therapeutic value, moving to Chicago in 1996 to pursue a career in acting, then moving to LA in 1998, landing some regular roles on TV series, particularly as Carrie's boss on King of Queens, the highs and lows of show business, his passion for live theater, dealing with challenging life events, family, parenting, "bad" habits, diet, exercise, meeting his lovely wife Mo' Collins, their connection with the TS Alliance, & Co-hosting Comedy For A Cure. We wrap it up with a brief discussion of his new podcast "Skuby Talk", the joys of podcasting and more!Music Credit, "Lucky Stars" www.woodywoodworth.com

My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the past few months, she had the opportunity to be a national Junior Leader for the TS Alliance and represent Arizona advocating in DC this past March. She was diagnosed with Tuberous Sclerosis Complex at age 3, initially with skin symptoms. Brianna discusses the challenges related to transitioning to adult care, kidney issues and surgery, and how the Mayo Clinic created a clinic based on their experience with Brianna! We touch on her go-to coping mechanisms, humor and sarcasm, transitioning to college and managing her medical needs, her experience as an advocate representing Arizona at the March on Capitol Hill and the exciting new Facebook group she helped create for young adults with TSC to be a safe space for other young adults with TSC (age 16-24) to share their stories, to make connections and discuss aspects of dealing with the disease and provide peer support to one another, and to share resources. "Our goal is to make sure no young adult with TSC has to face this fight alone" Thanks Briana! (music credit: www.woodywoodworth.com "peace like a river")

My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the past few months, she had the opportunity to be a national Junior Leader for the TS Alliance and represent Arizona advocating in DC this past March. She was diagnosed with Tuberous Sclerosis Complex at age 3, initially with skin symptoms. Brianna discusses the challenges related to transitioning to adult care, kidney issues and surgery, and how the Mayo Clinic created a clinic based on their experience with Brianna! We touch on her go-to coping mechanisms, humor and sarcasm, transitioning to college and managing her medical needs, her experience as an advocate representing Arizona at the March on Capitol Hill and the exciting new Facebook group she helped create for young adults with TSC to be a safe space for other young adults with TSC (age 16-24) to share their stories, to make connections and discuss aspects of dealing with the disease and provide peer support to one another, and to share resources. "Our goal is to make sure no young adult with TSC has to face this fight alone" Thanks Briana! (music credit: www.woodywoodworth.com "peace like a river")

Lauren Shores Shillinger was a dynamic, enthusiastic guest, ready to share her lived experience as a TSC Mom, Advocate and Chair of TS Alliance of Maryland. She was recently named one of four recipients of the TS Alliance Volunteer of the Year Award for 2018! After a 12-year career in the electronic healthcare industry when her daughter Brynleigh was born she became a stay at home mom. Brynleigh was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had never heard the diagnosis of Tuberous Sclerosis Complex. Since then, not only has Lauren jumped in with both feet to managing and advocating for her daughter' but also volunteering, advocating, marching for federal funding on Capitol Hill, participating in the National Step Forward to Cure TSC walk, fundraising, etc. We discuss a lot here....from her lived experience with seizures, brain surgery, getting an autism diagnosis, and many more frustrations & miracles along the way. She shares about a new project she's working on related to compiling a vast resource list for the TSC community to meet a huge unmet need for resources, as well as ongoing projects like obtaining proclamations at local and statewide levels recognizing May 15 as TSC Global Awareness Day. Lauren's words in a recent bio describing her and her family's efforts certainly ring true, "We have completely dedicated ourselves to making a difference in not only Brynleigh’s life and all who are affected by TSC". Thanks Lauren!!

Lauren Shores Shillinger was a dynamic, enthusiastic guest, ready to share her lived experience as a TSC Mom, Advocate and Chair of TS Alliance of Maryland. She was recently named one of four recipients of the TS Alliance Volunteer of the Year Award for 2018! After a 12-year career in the electronic healthcare industry when her daughter Brynleigh was born she became a stay at home mom. Brynleigh was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had never heard the diagnosis of Tuberous Sclerosis Complex. Since then, not only has Lauren jumped in with both feet to managing and advocating for her daughter' but also volunteering, advocating, marching for federal funding on Capitol Hill, participating in the National Step Forward to Cure TSC walk, fundraising, etc. We discuss a lot here....from her lived experience with seizures, brain surgery, getting an autism diagnosis, and many more frustrations & miracles along the way. She shares about a new project she's working on related to compiling a vast resource list for the TSC community to meet a huge unmet need for resources, as well as ongoing projects like obtaining proclamations at local and statewide levels recognizing May 15 as TSC Global Awareness Day. Lauren's words in a recent bio describing her and her family's efforts certainly ring true, "We have completely dedicated ourselves to making a difference in not only Brynleigh’s life and all who are affected by TSC". Thanks Lauren!!

Reiko Donato, TSC Mom, Brand Ambassador at Coeur Sports, Chair of the TS Alliance of Atlanta and past TS Alliance Board of Directors Member, walks me thru the timeline from diagnosis of her daughter thru the current day. She details the process of transition (transition planning is a formal process for helping kids with IEPs figure out what they want to do after high school and how to get there)and elaborates on a new program in her home state of Georgia called Transition Academy. Transition Academy is a career and work center for students with cognitive disabilities, ages 18-22, helping them make a smooth transition into the community upon their exit from the school system. We also delve into her entry into competitive running as a coping mechanism to deal with the stressors of TSC care. A longtime runner, Reiko decided to try a short triathlon. She was hooked, and in no time, was finishing her 5th Ironman in Chattanooga, TN, winning her age group on her birthday!!, Later this year, she will compete in her 6th Ironman in Hawaii. We discuss training, racing, fundraising, and much more. Reiko draws motivation from the unpredictable and often intense nature of TSC care, "While I've certainly felt overwhelmed at times, things never look as bad after a run, and I come home feeling virtually stress-free". Originally from Setagaya Tokyo, residing in Roswell, GA with her husband and daughter. "Reiko's perseverance, determination, risk-taking, traits have been central to Reiko's role as an advocate, heightening awareness of TSC and promoting research to lessen its impact" (https://cdmrp.army.mil/cwg/stories/2013/donato_profile) (music credit: https://www.purple-planet.com/)

Reiko Donato, TSC Mom, Brand Ambassador at Coeur Sports, Chair of the TS Alliance of Atlanta and past TS Alliance Board of Directors Member, walks me thru the timeline from diagnosis of her daughter thru the current day. She details the process of transition (transition planning is a formal process for helping kids with IEPs figure out what they want to do after high school and how to get there)and elaborates on a new program in her home state of Georgia called Transition Academy. Transition Academy is a career and work center for students with cognitive disabilities, ages 18-22, helping them make a smooth transition into the community upon their exit from the school system. We also delve into her entry into competitive running as a coping mechanism to deal with the stressors of TSC care. A longtime runner, Reiko decided to try a short triathlon. She was hooked, and in no time, was finishing her 5th Ironman in Chattanooga, TN, winning her age group on her birthday!!, Later this year, she will compete in her 6th Ironman in Hawaii. We discuss training, racing, fundraising, and much more. Reiko draws motivation from the unpredictable and often intense nature of TSC care, "While I've certainly felt overwhelmed at times, things never look as bad after a run, and I come home feeling virtually stress-free". Originally from Setagaya Tokyo, residing in Roswell, GA with her husband and daughter. "Reiko's perseverance, determination, risk-taking, traits have been central to Reiko's role as an advocate, heightening awareness of TSC and promoting research to lessen its impact" (https://cdmrp.army.mil/cwg/stories/2013/donato_profile) (music credit: https://www.purple-planet.com/)

Kari Luther and Sharifah Hardie interview Kari Luther Rosbeck, President & Chief Executive Officer, Tuberous Sclerosis Alliance Kari joined the TS Alliance in June 2001 and became President and CEO in November 2007. She has been involved in nonprofit fundraising and volunteer management for more than 30 years. During Kari’s tenure as President & CEO, the TS Alliance established a comprehensive research program fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. The Unlock the Cure research strategy focuses on key points along the drug discovery path and has also served as a capital fundraising campaign with more than $12 million raised for TSC research since August 2011. She developed and implemented a vast national network of more than 30 volunteer branches called Community Alliances; increased volunteer participation from 90 individuals to more than 2,000; and through her involvement in special events and major gift fundraising, helped increase the annual revenue by more than 50%. Kari graduated with a BA degree in Theatre from the State University of New York at Albany and upon graduation founded a theatre company with fellow graduates in New York, NY. After the loss of her first child, Noell, to sudden infant death, she dedicated her career to helping other families. Visit Kari at: tsalliance.org To watch more interviews, to be a guest or for sponsorship opportunities visit: AskSharifah.com --- Support this podcast: https://anchor.fm/sharifah-hardie/support

Debora Moritz is a Grassroots Advocate, Chair of TS Alliance of Arizona, Member of the Government Relations Committee, and most importantly "just Griffin's mom trying to make things better for him and few other folks along the way." From diagnosis of TSC at 5 months, vigabatrin failure, ACTH treatment success, early frustrations with lack of knowledge, Debora kept asking questions everywhere she went with Griffin. Leaving no stone unturned in terms of trying anything and everything that she could discover that may help stop the seizures, her perseverance led to Griffin's getting chosen to participate in a clinical trial of an investigational medication in to shrink the SEGAs, and as a result, a significant reduction occurred in the size of his tumors. The exceptional results of this trial led to the rapid FDA approval of Afinitor, the first drug designated to specifically treat SEGAs associated with tuberous sclerosis complex (TSC) in 2010. We discuss Debora's government advocacy in the evolution of the March on Capitol Hill, growing from a handful of people to well over 100 volunteers last year and getting 200 Democratic & Republican Representatives signing on to support TSCRP funding. We hit some of the highlights from successes over the years, working with other volunteers, making personal connections and continually asking the tough questions that demand better answers are part of Debora's methods of grassroots advocacy. In her own words, " We cannot wait for others to keep the momentum going for us; we must do so together. "We can change lives. And we can get to a place where no one has to suffer from the devastating effects of tuberous sclerosis complex, but it takes action." (music credit: https://www.purple-planet.com/)

Debora Moritz is a Grassroots Advocate, Chair of TS Alliance of Arizona, Member of the Government Relations Committee, and most importantly "just Griffin's mom trying to make things better for him and few other folks along the way." From diagnosis of TSC at 5 months, vigabatrin failure, ACTH treatment success, early frustrations with lack of knowledge, Debora kept asking questions everywhere she went with Griffin. Leaving no stone unturned in terms of trying anything and everything that she could discover that may help stop the seizures, her perseverance led to Griffin's getting chosen to participate in a clinical trial of an investigational medication in to shrink the SEGAs, and as a result, a significant reduction occurred in the size of his tumors. The exceptional results of this trial led to the rapid FDA approval of Afinitor, the first drug designated to specifically treat SEGAs associated with tuberous sclerosis complex (TSC) in 2010. We discuss Debora's government advocacy in the evolution of the March on Capitol Hill, growing from a handful of people to well over 100 volunteers last year and getting 200 Democratic & Republican Representatives signing on to support TSCRP funding. We hit some of the highlights from successes over the years, working with other volunteers, making personal connections and continually asking the tough questions that demand better answers are part of Debora's methods of grassroots advocacy. In her own words, " We cannot wait for others to keep the momentum going for us; we must do so together. "We can change lives. And we can get to a place where no one has to suffer from the devastating effects of tuberous sclerosis complex, but it takes action." (music credit: https://www.purple-planet.com/)

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

Kari Luther Rosbeck, President and CEO of the TS Alliance since 2007, has masterfully steered the ship from the early days where “all we could do was hold the hands of parents as they went thru the struggle to today where we have drugs that shrink TSC tumors and are starting our first trial aimed at preventing epilepsy from ever developing in infants with TSC.” In this personal yet powerful episode, we discuss how the untimely death of her infant daughter to SIDS, opened her eyes to a yearning for meaning she never knew she had. “ I wanted to take the feelings I had and use them to change the world, so other families never had to experience the loss I experienced.” Through methodical, persistent, unrelenting grit, Kari and the families she fights for changed everything. She has built a culture of respect, creativity, and collaboration where everyone has a voice. An example of this grassroots collaboration is the Congressionally-Directed Medical Research Program which began funding TSC research at the Department of Defense because of one grandfather’s lobbying of the Appropriations Committee Chairman got $1 million set aside in the annual federal budget in 2002. We have to fight for this every single year, with our March on Capitol Hill, but since then, $83 million has been appropriated for TSC research, and it’s made a profound difference. There’s much more included here & much thanks to Kari for taking the time to share from her heart and soul and providing ongoing inspiration and hope to all those affected by TSC personally or in our loved ones, and steering us all toward a better understanding of this linchpin disease meaning that every advance made in our search for answers and a cure may also lead to answers and advances in other more prevalent diseases like epilepsy, autism, and cancer. (intro music credit: https://www.purple-planet.com)

In this episode, my guest Katie Smith, Manager of Research and Global Affairs at TS Alliance discusses with me in detail, just how she coordinates March on Capitol Hill every year to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP). She gives an inside look at the process of organizing volunteers from across the country for this gargantuan undertaking as well as mentions the whats and whys of follow up with our Congresspeople that's so important now thru month's end. Katie joined the TS Alliance staff in 2006. She currently oversees the organization’s international outreach efforts, directs government advocacy efforts, supports the research grants process, and has served as the secretary of TSC International for the past 5 years. During her tenure with the TS Alliance, Katie has implemented our Global Alliance program, which currently includes formal partnerships with Israel, Canada, Mexico, Asia, India and Hungary. Thanks, Katie for giving us this behind the scenes glimpse of how this event comes together, as well as emphasizing the ongoing efforts needed by volunteers to follow up and continue to get record numbers of bipartisan support in the House & Senate of TSCRP, enabling further research, better treatments, leading to a cure for TSC. (intro music: https://www.purple-planet.com}

In this episode, my guest Katie Smith, Manager of Research and Global Affairs at TS Alliance discusses with me in detail, just how she coordinates March on Capitol Hill every year to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP). She gives an inside look at the process of organizing volunteers from across the country for this gargantuan undertaking as well as mentions the whats and whys of follow up with our Congresspeople that's so important now thru month's end. Katie joined the TS Alliance staff in 2006. She currently oversees the organization’s international outreach efforts, directs government advocacy efforts, supports the research grants process, and has served as the secretary of TSC International for the past 5 years. During her tenure with the TS Alliance, Katie has implemented our Global Alliance program, which currently includes formal partnerships with Israel, Canada, Mexico, Asia, India and Hungary. Thanks, Katie for giving us this behind the scenes glimpse of how this event comes together, as well as emphasizing the ongoing efforts needed by volunteers to follow up and continue to get record numbers of bipartisan support in the House & Senate of TSCRP, enabling further research, better treatments, leading to a cure for TSC.(intro music: https://www.purple-planet.com}

Kari Luther Rosbeck, President and CEO of the TS Alliance since 2007, has masterfully steered the ship from the early days where “all we could do was hold the hands of parents as they went thru the struggle to today where we have drugs that shrink TSC tumors and are starting our first trial aimed at preventing epilepsy from ever developing in infants with TSC.” In this personal yet powerful episode, we discuss how the untimely death of her infant daughter to SIDS, opened her eyes to a yearning for meaning she never knew she had. “ I wanted to take the feelings I had and use them to change the world, so other families never had to experience the loss I experienced.” Through methodical, persistent, unrelenting grit, Kari and the families she fights for changed everything. She has built a culture of respect, creativity, and collaboration where everyone has a voice. An example of this grassroots collaboration is the Congressionally-Directed Medical Research Program which began funding TSC research at the Department of Defense because of one grandfather’s lobbying of the Appropriations Committee Chairman got $1 million set aside in the annual federal budget in 2002. We have to fight for this every single year, with our March on Capitol Hill, but since then, $83 million has been appropriated for TSC research, and it’s made a profound difference. There’s much more included here & much thanks to Kari for taking the time to share from her heart and soul and providing ongoing inspiration and hope to all those affected by TSC personally or in our loved ones, and steering us all toward a better understanding of this linchpin disease meaning that every advance made in our search for answers and a cure may also lead to answers and advances in other more prevalent diseases like epilepsy, autism, and cancer. (intro music credit: https://www.purple-planet.com)

Marlo Grolnic, TSC Mom, past chair of the Tuberous Sclerosis Alliance of New England and previous guest on TSC TALKS in September 2018, takes time out of her day to give us an update on how her son's adjusted to an out of district placement he had just started when we spoke in the fall. She elaborates on how this adjustment has been for the family, as well as describing improvements in TAND related behavior since we last spoke. TAND (tuberous sclerosis associated neuropsychiatric disorders), affects 90% of those with a diagnosis of TSC. She also answers some questions that have come up in Facebook groups related to TAND and gives a perspective of what has worked for their family, how it has worked, as well as what has not worked, Behaviors related to TSC are a double whammy on top of the medical aspects of TSC care and management. Marlo, a bit of a veteran of the TSC/TAND lived experience, acknowledges the ongoing uncertainty and challenges TSC/TAND has presented, yet also provides insight and information, and once again, hope that quality of life is possible.

Marlo Grolnic, TSC Mom, past chair of the Tuberous Sclerosis Alliance of New England and previous guest on TSC TALKS in September 2018, takes time out of her day to give us an update on how her son's adjusted to an out of district placement he had just started when we spoke in the fall. She elaborates on how this adjustment has been for the family, as well as describing improvements in TAND related behavior since we last spoke. TAND (tuberous sclerosis associated neuropsychiatric disorders), affects 90% of those with a diagnosis of TSC. She also answers some questions that have come up in Facebook groups related to TAND and gives a perspective of what has worked for their family, how it has worked, as well as what has not worked, Behaviors related to TSC are a double whammy on top of the medical aspects of TSC care and management. Marlo, a bit of a veteran of the TSC/TAND lived experience, acknowledges the ongoing uncertainty and challenges TSC/TAND has presented, yet also provides insight and information, and once again, hope that quality of life is possible.

A discussion with Shannon Grandia, wife, mother, first-grade teacher, TS Alliance Volunteer, and Advocate! She shares her experience over the last 19 years with her children, Rylee, Jake and Luke, all affected by TSC as well as spouse Rob who is also affected. Shannon is an incredible human being and the love she has for her family truly permeates this discussion. We chat about diagnoses, manifestations, treatments, family impact and more. Shannon is able to truly understand the importance of acceptance and living in the present. Her choice to focus daily on the positive and cultivate joy in her family is truly inspirational and motivating. While acknowledging the extreme challenges and uncertainty involved in managing this disease she continually expresses gratitude for all the many ways the family has been fortunate, outlining how teamwork, organization, church and community support, TS Alliance involvement, have all contributed to this beautiful life that Shannon and her family live one day at a time.

A discussion with Shannon Grandia, wife, mother, first-grade teacher, TS Alliance Volunteer, and Advocate! She shares her experience over the last 19 years with her children, Rylee, Jake and Luke, all affected by TSC as well as spouse Rob who is also affected. Shannon is an incredible human being and the love she has for her family truly permeates this discussion. We chat about diagnoses, manifestations, treatments, family impact and more. Shannon is able to truly understand the importance of acceptance and living in the present. Her choice to focus daily on the positive and cultivate joy in her family is truly inspirational and motivating. While acknowledging the extreme challenges and uncertainty involved in managing this disease she continually expresses gratitude for all the many ways the family has been fortunate, outlining how teamwork, organization, church and community support, TS Alliance involvement, have all contributed to this beautiful life that Shannon and her family live one day at a time.

HOPE WINS. In the words of new TSC Mom Meghan Wilson, "Live the Moments". Meghan talks about her baby Cameran's diagnosis at 2 months, getting seizure control, ketogenic diet, the MGH TS Clinic, and family support with TeamCamBam. #TeamCamBam was made up of multiple family members all running for Cameran, and TS Alliance as part of TeamTSC , in the recent Marine Corp Marathon! Team Cam Bam raised over $30K for TS Alliance!

HOPE WINS. In the words of new TSC Mom Meghan Wilson, "Live the Moments". Meghan talks about her baby Cameran's diagnosis at 2 months, getting seizure control, ketogenic diet, the MGH TS Clinic, and family support with TeamCamBam. #TeamCamBam was made up of multiple family members all running for Cameran, and TS Alliance as part of TeamTSC , in the recent Marine Corp Marathon! Team Cam Bam raised over $30K for TS Alliance!

Over a million people worldwide have Tuberous Sclerosis Complex. This alliance of organizations is looking to eradicate this disease. Lisa joined the TS Alliance in 2012 but her original introduction to the organization was in 2006 when her son was diagnosed with tuberous sclerosis complex (TSC). In her current role at the Tuberous Sclerosis Alliance she works closely with both private and corporate donors and she maintains her focus on helping the TSC community she is very much a part of by raising the funds to support research and programs for families and individuals with TSC. The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. TSC is a genetic disorder that causes tumors to form in vital organs and is the leading known genetic cause for both epilepsy and autism."