Podcasts about tuberoussclerosis

This is a special edition, TSC Talks Revival episode with Justin Leslie! Justin is an ex-Pfizer scientist and whistleblower. Justin was also one of my first guests on my podcast "TSC Talks" in 2018, (https://bit.ly/3Iz0FUU) where he shared his story about his experience with diagnosis and living with TSC. This clip is a short glimpse from our full conversation, dropping soon. In "Project Whistleblower" Justin shares his personal journey, including living with Tuberous Sclerosis Complex (TSC), a condition that not only shaped his childhood but also inspired him to pursue a career in pharmacology, aiming to find a cure for his condition.During his time as a vaccine scientist at Pfizer, Justin began to collaborate undercover with Project Veritas. This partnership led to the revealing of mind blowing revelations about the COVID-19 ‘scamdemic' and other alleged misconduct within Pfizer. However, he soon started to observe concerning behaviors within Project Veritas, such as the suppression of timely truths and vaccine concerns. These observations led him to question the integrity of the organization and its founder, James O'Keefe.In collaboration with Marty Leeds, Justin has produced the compelling documentary “Project Whistleblower.” This film delves into his experiences and his growing awareness of the covert tactics and manipulations at Pfizer, Project Veritas, and OMG Media Group. In an era rife with lies and deception, the documentary underscores the revolutionary act of truth-telling." (credit to Amanda Vollmer: https://yummy.doctor/video-list/advocates-for-truth-amandha-vollmer-adv-with-justin-leslie/)Contact info for Justin!Justin Leslie: https://justintegrity.net/Justin's Linktree: https://linktr.ee/justinleslieContact: justinleslie3@protonmail.comDonate to Justin's work: https://www.givesendgo.com/ProjectWhistleblowerWATCH THE DOCUMENTARY HERE:  https://justintegrity.net/project-whistleblower/Produced by: https://linktr.ee.com/jillwoodworth https://jillwoodworth.comShort clip produced by @jillwoodworth https://jillwoodworth.comBecome a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

Jill wraps up the podcast! I started in 2016 interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuas and/or parent/caregivers affected by a chronic illness like TSC. Pushing the boundaries of what was deemed "safe and effective" by our medical system, I continued to put info out there based on my own lived experience as a parent/caregiver living and dealing with what I'd come to discover is CPTSD if you want to use a label. It was my vision and still is that all "remedies" for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all. Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what's worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care. Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one's reactions to other's sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we're all having vastly different experiences yet we all long to be here now, safe, loved, whole, home. Thanks for tuning in and being here there and everywhere. It's been the pleasure of a lifetime to have the opportunity to create and share this work. Love Jill

Jill wraps up the podcast! I started in 2016 interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuas and/or parent/caregivers affected by a chronic illness like TSC. Pushing the boundaries of what was deemed "safe and effective" by our medical system, I continued to put info out there based on my own lived experience as a parent/caregiver living and dealing with what I'd come to discover is CPTSD if you want to use a label. It was my vision and still is that all "remedies" for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all. Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what's worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care.Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one's reactions to other's sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we're all having vastly different experiences yet we all long to be here now, safe, loved, whole, home.Thanks for tuning in and being here there and everywhere. It's been the pleasure of a lifetime to have the opportunity to create and share this work. Love Jill

SEE SHOW NOTES FOR PART ONE FOR MORE DETAIL! I had the pleasure of interviewing Leigh Anne Bianchi, Founder of Good Citizenship Project recently on TSC Talks. She was joined by her business manager Carla Bell. We had a free ranging discussion covering many topics but all regarding the benefits of the sort of unconventional programming Leigh Anne has developed through GCP and how this meets many of the huge gaping unmet needs for those individuals diagnosed with autism and other special needs that our systems of care have become too siloed and disconnected to address. “Developing a sense of meaning and purpose, social-emotional skills, work ethic, and peer relationships by volunteering, distributing donations, and supporting local farms.” For more information on Good Citizenship Project, FB page: https://www.facebook.com/GoodCitizenshipProject/ phone: (508) 868-0293 email: leighanne.bianchi143@gmail.com Timestamps for part 2: 0-52 Intro 00:54- Antonio's Waitress Olivia treats them like humans, the start of the discussion on sexuality and special needs 2:26 All the PC of working w/special needs has made sexuality issues really challenging. People taken advantage of, they are developmentally younger and no one talks about this 5:03 Karaoke, real-world situations help 5:28 Dashboard confessionals, you can say stuff without eye contact when conversations about penises and vaginas come out. Pediatricians recommend using scientific wording, Leigh Anne took all the training on autism/special needs and sexuality and can talk candidly. 9:27 Why questions, keep asking them. See the question behind the action. One client wanted to see Leigh Anne's breasts, curiosity, she didn't react or file a report but discussed it with him. So many lives could be ruined if everything is flagged as inappropriate. This population never gets to ask questions 11:06 Leigh Anne had to spend 5 minutes spend w/individual who had sex offender charges in ISP and Leigh Anne knew charges were not true-example 13:16 Paying for Good Citizenship Project….if you have an autism diagnosis, sometimes easier to get funding, agencies often don't want to pick up those with autism but things changing and agencies can help you get funding to cover through DESE/Wraparound Family Services, Public Partnerships through Participant directed programming conduit, Private pay, PCA funds, DDS Family Respite funds 20:11 Leigh Anne should be paid more for all she offers. Charges $30/hour but will work with families. Leigh Anne does not have a BCBA or other letters after the name that would allow her to be recognized as a service agent but has the lived experience and work experience to exceed those with mere education 23:26 Becoming a non-profit would mean more strings attached, Johnny her horse would have to be certified as a therapy horse, her dog a pit bull mix, too many hoops to jump through. Jack couldn't have used a log splitter! 26:31 Investor/philanthropist would be ideal with no strings attached. Leigh Anne took a chance w/Camp Marshall, wanting to partner and have it be her home base. If associated with an agency the volunteers would need to get paid. All benefits from GCP are not recognized as beneficial for many who don't understand the depth of what she does. 31:31 Work to ride is an option or unpaid internship/apprenticeship. So much happens in learning these farm skills that is energetic…deciding how to perform tasks and learning from any mistakes, having the freedom to learn from mistakes like using a pitchfork instead of a shovel for a particular job… 34:21 Farmers giving the flexibility to figure out the approach to completing a job is helpful. So then it's not regimented, can focus on the end results, not the niggling details and farmwork facilitates executive functioning in this area. Learning at the moment, the Montessori approach is part of Leigh Anne's process 37:31 Give individual rules, allow them to screw up and figure it out is more powerful than reading how to do something in a book or being told what to do. Forced problem solving, you remember you had to take a different approach. This is empowering! 40:46 GCP NEEDS MONEY TO EXPAND! Fundraisers coming soon. Discussion of fundraisers 43:36 Looking for a home base with specific parameters. She needs to bring her animals. This has been challenging, small private barns are nervous to have special needs population-liability. Leigh Anne looking for a life in a caretaker position 46:21 Jack came in (Jill's son who participates in GCP). Leigh Anne is looking for a situation where most of the labor at the new setting is done by members of the GCP. She screens applicants for a good match, meets parents and individuals, gives a grace period. Wants it known GCP is a for-profit not an agency. 49:01 But Leigh Anne is more than a job coach. The people she supports are part of her family. “So you want me to pay for you to force my kid to do slave labor” is some people's attitude. No, they are learning transformative, resume-worthy skills. 51:11 Leigh Anne went to Salter College, able to be successful b/c was focused on one thing. There is real value in jobs that don't require a degree. People do not see the scope of autism…Ford Motor Co was seeking to hire those on the Autism spectrum b/c of attention to detail/focus. 55:11 One of the goals of GCP is to raise awareness of what an autistic person looks like which has spread by word of mouth, inspiring others to think outside of the box in creating programs for this population. B/c of relationships developed through GCP, Leigh Anne has options-a temporary place to live if needed “if you do good things, they come back”. In our society many expect something in return for every little thing 60:11 Carla Bell is Leigh Anne's business manager, helping her with a business plan and fundraising has worked in special ed Thanks so much for listening!!! https://tsctalks.com

SEE SHOW NOTES FOR PART ONE FOR MORE DETAIL! I had the pleasure of interviewing Leigh Anne Bianchi, Founder of Good Citizenship Project recently on TSC Talks. She was joined by her business manager Carla Bell. We had a free ranging discussion covering many topics but all regarding the benefits of the sort of unconventional programming Leigh Anne has developed through GCP and how this meets many of the huge gaping unmet needs for those individuals diagnosed with autism and other special needs that our systems of care have become too siloed and disconnected to address. “Developing a sense of meaning and purpose, social-emotional skills, work ethic, and peer relationships by volunteering, distributing donations, and supporting local farms.”For more information on Good Citizenship Project, FB page: https://www.facebook.com/GoodCitizenshipProject/ phone: (508) 868-0293 email: leighanne.bianchi143@gmail.comTimestamps for part 2:0-52 Intro00:54- Antonio's Waitress Olivia treats them like humans, the start of the discussion on sexuality and special needs2:26 All the PC of working w/special needs has made sexuality issues really challenging. People taken advantage of, they are developmentally younger and no one talks about this5:03 Karaoke, real-world situations help5:28 Dashboard confessionals, you can say stuff without eye contact when conversations about penises and vaginas come out. Pediatricians recommend using scientific wording, Leigh Anne took all the training on autism/special needs and sexuality and can talk candidly.9:27 Why questions, keep asking them. See the question behind the action. One client wanted to see Leigh Anne's breasts, curiosity, she didn't react or file a report but discussed it with him. So many lives could be ruined if everything is flagged as inappropriate. This population never gets to ask questions11:06 Leigh Anne had to spend 5 minutes spend w/individual who had sex offender charges in ISP and Leigh Anne knew charges were not true-example13:16 Paying for Good Citizenship Project….if you have an autism diagnosis, sometimes easier to get funding, agencies often don't want to pick up those with autism but things changing and agencies can help you get funding to cover through DESE/Wraparound Family Services, Public Partnerships through Participant directed programming conduit, Private pay, PCA funds, DDS Family Respite funds20:11 Leigh Anne should be paid more for all she offers. Charges $30/hour but will work with families. Leigh Anne does not have a BCBA or other letters after the name that would allow her to be recognized as a service agent but has the lived experience and work experience to exceed those with mere education23:26 Becoming a non-profit would mean more strings attached, Johnny her horse would have to be certified as a therapy horse, her dog a pit bull mix, too many hoops to jump through. Jack couldn't have used a log splitter!26:31 Investor/philanthropist would be ideal with no strings attached. Leigh Anne took a chance w/Camp Marshall, wanting to partner and have it be her home base. If associated with an agency the volunteers would need to get paid. All benefits from GCP are not recognized as beneficial for many who don't understand the depth of what she does. 31:31 Work to ride is an option or unpaid internship/apprenticeship. So much happens in learning these farm skills that is energetic…deciding how to perform tasks and learning from any mistakes, having the freedom to learn from mistakes like using a pitchfork instead of a shovel for a particular job…34:21 Farmers giving the flexibility to figure out the approach to completing a job is helpful. So then it's not regimented, can focus on the end results, not the niggling details and farmwork facilitates executive functioning in this area. Learning at the moment, the Montessori approach is part of Leigh Anne's process37:31 Give individual rules, allow them to screw up and figure it out is more powerful than reading how to do something in a book or being told what to do. Forced problem solving, you remember you had to take a different approach. This is empowering!40:46 GCP NEEDS MONEY TO EXPAND! Fundraisers coming soon. Discussion of fundraisers43:36 Looking for a home base with specific parameters. She needs to bring her animals. This has been challenging, small private barns are nervous to have special needs population-liability. Leigh Anne looking for a life in a caretaker position46:21 Jack came in (Jill's son who participates in GCP). Leigh Anne is looking for a situation where most of the labor at the new setting is done by members of the GCP. She screens applicants for a good match, meets parents and individuals, gives a grace period. Wants it known GCP is a for-profit not an agency. 49:01 But Leigh Anne is more than a job coach. The people she supports are part of her family. “So you want me to pay for you to force my kid to do slave labor” is some people's attitude. No, they are learning transformative, resume-worthy skills.51:11 Leigh Anne went to Salter College, able to be successful b/c was focused on one thing. There is real value in jobs that don't require a degree. People do not see the scope of autism…Ford Motor Co was seeking to hire those on the Autism spectrum b/c of attention to detail/focus.55:11 One of the goals of GCP is to raise awareness of what an autistic person looks like which has spread by word of mouth, inspiring others to think outside of the box in creating programs for this population. B/c of relationships developed through GCP, Leigh Anne has options-a temporary place to live if needed “if you do good things, they come back”. In our society many expect something in return for every little thing60:11 Carla Bell is Leigh Anne's business manager, helping her with a business plan and fundraising has worked in special edThanks so much for listening!!! https://tsctalks.com

I had the pleasure of interviewing Leigh Anne Bianchi, Founder of Good Citizenship Project recently on TSC Talks. She was joined by her business manager Carla Bell. We had a free ranging discussion covering many topics but all regarding the benefits of the sort of unconventional programming Leigh Anne has developed through GCP and how this meets many of the huge gaping unmet needs for those individuals diagnosed with autism and other special needs that our systems of care have become too siloed and disconnected to address. “Developing a sense of meaning and purpose, social-emotional skills, work ethic, and peer relationships by volunteering, distributing donations, and supporting local farms." In my opinion, what she shares are gems of vital importance. AS someone who carries a diagnosis of Autism AND has worked within our siloed and disconnected systems of care, she gets it on a whole new level. What is missing, what is needed. One of her most important assets is her ability to ask why and watch, observe what is going on without judgment or preconceived notions based on dogmatic teachings not relevant to real life. Leigh Anne IS real life. She knows how what and why to reach and engage kids who have often had no one their entire lives really see them. The energetics of the interactions are often the most important part and the very part of our offspring's with special needs education that is rarely observed or explored. To do so freely requires unconventional programming and thinking and IS what will give these individuals deep embedded experience to carry forward and integrate into every aspect of their lives. Priceless. So that being said, this is one of the most important discussions I've had to date on TSC Talks personally as my son Jack has benefitted immensely from participating in this sort of immersive, apprenticeship experience gaining valuable skills, both tangible and energetic. Here's a recent description of gains made: “There's A LOT going on there when we're together. Not just the obvious, like physical fitness, and employment-based objectives, but Distress Tolerance, Mindfulness, Interpersonal Effectiveness, time management, generalizing skills, problem-solving.... learning how and when NOT to answer back to an authority figure. (Instead of saying, "I know," or "I was going to do that," when he clearly wasn't, just saying "OK.") We address that OFTEN. Staying on topic, being able to complete a task WHILE socializing... Another example is planning. Looking at the task at hand (like cleaning a pen or stall) and being able to decide which tools you're going to need (the pen might require a garden rake and a metal pitchfork, vs. an aluminum shovel and a plastic pitchfork for the stall), and how to efficiently complete the task. Right now, he tends to be on autopilot at Jesse's, because he's done it before, and knows what tools to use. But if we go to a different barn/farm, he will sometimes just walk into the stall without any tools or automatically grab the tools that he'd use as Jesse's. But Jesse has brand-new rubber stall mats under the shavings, whereas other barns might have hard, packed-down dirt that is uneven, old, warped stall mats, or even slab cement under the shavings, which impacts the tools needed for the job. Additionally, the concept of 'using your head to save your feet and planning out the technique or way you're going to do something....like cleaning the stall of the older horse first so that you can put him in there to eat first since it takes him so long. Or, turning on the hose as you walk by it upon arrival, so you don't have to go all the way back out to the spigot when you're ready to fill waters” You get the idea. For more information on Good Citizenship Project, FB page: https://www.facebook.com/GoodCitizenshipProject/ phone: (508) 868-0293 email: leighanne.bianchi143@gmail.com 0-4:22 Introduction/opening comments 4:22 Formative years, Grandpa Frank, early signs of autism, overlooked in educational settings, temper, frustrations, family-supportive 6:42 Principal's office, using a paddle, siblings with similarities 8:27 People on the spectrum are empathetic! Animals get it 9:52 Meeting Johnny-“he chose me”, a sucker for the underdog, …both dogs rescues, cats and house chicken! 12:12 Leigh Anne's challenges-struggled through school, awareness of being different 12:47 Post grad programs-infuriating and necessary-started with good intentions but people not honest with students about reality 14:57 4 years in post grad almost wasted, doing worksheets, Leigh Anne shares story of a girl she worked with having to do preschool puzzles 17:02 Toileting-EIP avoided b/c it was assumed she was not going to ever use toilet but Leigh Anne noticed underdeveloped musculature~ “It's amazing what you can figure out if you just pay attention a little bit” BCBA determines course of her future…. on a different track if cannot use toilet! 17:10 we need more people like you who presume competence! 19:57 Leigh Anne can see birds eye view on why the life skills programs are the way they are..too many kids, squeaky wheel/most intense needs, profound symptoms get attention and people with milder, more subtle issues fly under the radar 22:22 stop and look at why? Leigh Anne gives example with woman from Belchertown-only thing she could control was her bowels so used incontinence …give options and let her choose and always ask WHY is this happening? 26:02 So many things were out of young lady's control, diagnosis can be a tool and a knife that cuts both ways 27:32 having a diagnosis can be helpful if you can handle it… 28:37 Rose colored glasses, person first language and pendulum swung other way for those turning 22. Leigh Anne thinks there should be required classes for parents, so they know what to expect when turning 22 and transitioning to adult services, etc. 32:29 Leigh Anne is UNCONVENTIONAL!! Case loads at DDS extreme, high turnover, problems with adequate staffing in group homes 33:16 GCP (good citizenship project) Started when she was working as a program coordinator at Seven Hills, minimal consequences for behavior with not realistic environment. Folks turning 22 smart, capable wonderful kids with potential and no self-awareness skills, minimal options 37:32 Nonprofit/volunteering issues, for profit volunteer issues, liability issues, not a lot of places for GCP so L.A. developed plan that you could not join GCP unless you had good attendance, no aggression, pitched to Phil Philbin (former head of Aspire) and GCP was started at Seven Hills 41:40 First event was a chili cook off, building community relations, thank firefighters, get constructive feedback, also hosted Friendsgiving, kids did all the work 43:44 GCP-you do nice things for other people without expectation of anything in return” You feel good when you do good things, and it will come back to you 46:32 Info on finding GCP, see above, no requirements for joining, Leigh Anne's rules0deal with circumstances, weather, not for faint of heart, hard work 49:26 Jack's response to GCP amazing. “A taste of success” from Better Off Dead

I had the pleasure of interviewing Leigh Anne Bianchi, Founder of Good Citizenship Project recently on TSC Talks. She was joined by her business manager Carla Bell. We had a free ranging discussion covering many topics but all regarding the benefits of the sort of unconventional programming Leigh Anne has developed through GCP and how this meets many of the huge gaping unmet needs for those individuals diagnosed with autism and other special needs that our systems of care have become too siloed and disconnected to address. “Developing a sense of meaning and purpose, social-emotional skills, work ethic, and peer relationships by volunteering, distributing donations, and supporting local farms."In my opinion, what she shares are gems of vital importance. AS someone who carries a diagnosis of Autism AND has worked within our siloed and disconnected systems of care, she gets it on a whole new level. What is missing, what is needed. One of her most important assets is her ability to ask why and watch, observe what is going on without judgment or preconceived notions based on dogmatic teachings not relevant to real life. Leigh Anne IS real life. She knows how what and why to reach and engage kids who have often had no one their entire lives really see them. The energetics of the interactions are often the most important part and the very part of our offspring's with special needs education that is rarely observed or explored. To do so freely requires unconventional programming and thinking and IS what will give these individuals deep embedded experience to carry forward and integrate into every aspect of their lives. Priceless. So that being said, this is one of the most important discussions I've had to date on TSC Talks personally as my son Jack has benefitted immensely from participating in this sort of immersive, apprenticeship experience gaining valuable skills, both tangible and energetic. Here's a recent description of gains made: “There's A LOT going on there when we're together. Not just the obvious, like physical fitness, and employment-based objectives, but Distress Tolerance, Mindfulness, Interpersonal Effectiveness, time management, generalizing skills, problem-solving.... learning how and when NOT to answer back to an authority figure. (Instead of saying, "I know," or "I was going to do that," when he clearly wasn't, just saying "OK.") We address that OFTEN. Staying on topic, being able to complete a task WHILE socializing... Another example is planning. Looking at the task at hand (like cleaning a pen or stall) and being able to decide which tools you're going to need (the pen might require a garden rake and a metal pitchfork, vs. an aluminum shovel and a plastic pitchfork for the stall), and how to efficiently complete the task. Right now, he tends to be on autopilot at Jesse's, because he's done it before, and knows what tools to use. But if we go to a different barn/farm, he will sometimes just walk into the stall without any tools or automatically grab the tools that he'd use as Jesse's. But Jesse has brand-new rubber stall mats under the shavings, whereas other barns might have hard, packed-down dirt that is uneven, old, warped stall mats, or even slab cement under the shavings, which impacts the tools needed for the job. Additionally, the concept of 'using your head to save your feet and planning out the technique or way you're going to do something....like cleaning the stall of the older horse first so that you can put him in there to eat first since it takes him so long. Or, turning on the hose as you walk by it upon arrival, so you don't have to go all the way back out to the spigot when you're ready to fill waters” You get the idea. For more information on Good Citizenship Project, FB page: https://www.facebook.com/GoodCitizenshipProject/ phone: (508) 868-0293 email: leighanne.bianchi143@gmail.com0-4:22 Introduction/opening comments4:22 Formative years, Grandpa Frank, early signs of autism, overlooked in educational settings, temper, frustrations, family-supportive6:42 Principal's office, using a paddle, siblings with similarities8:27 People on the spectrum are empathetic! Animals get it9:52 Meeting Johnny-“he chose me”, a sucker for the underdog, …both dogs rescues, cats and house chicken!12:12 Leigh Anne's challenges-struggled through school, awareness of being different12:47 Post grad programs-infuriating and necessary-started with good intentions but people not honest with students about reality14:57 4 years in post grad almost wasted, doing worksheets, Leigh Anne shares story of a girl she worked with having to do preschool puzzles17:02 Toileting-EIP avoided b/c it was assumed she was not going to ever use toilet but Leigh Anne noticed underdeveloped musculature~ “It's amazing what you can figure out if you just pay attention a little bit” BCBA determines course of her future…. on a different track if cannot use toilet!17:10 we need more people like you who presume competence!19:57 Leigh Anne can see birds eye view on why the life skills programs are the way they are..too many kids, squeaky wheel/most intense needs, profound symptoms get attention and people with milder, more subtle issues fly under the radar22:22 stop and look at why? Leigh Anne gives example with woman from Belchertown-only thing she could control was her bowels so used incontinence …give options and let her choose and always ask WHY is this happening?26:02 So many things were out of young lady's control, diagnosis can be a tool and a knife that cuts both ways27:32 having a diagnosis can be helpful if you can handle it…28:37 Rose colored glasses, person first language and pendulum swung other way for those turning 22. Leigh Anne thinks there should be required classes for parents, so they know what to expect when turning 22 and transitioning to adult services, etc.32:29 Leigh Anne is UNCONVENTIONAL!! Case loads at DDS extreme, high turnover, problems with adequate staffing in group homes33:16 GCP (good citizenship project) Started when she was working as a program coordinator at Seven Hills, minimal consequences for behavior with not realistic environment. Folks turning 22 smart, capable wonderful kids with potential and no self-awareness skills, minimal options37:32 Nonprofit/volunteering issues, for profit volunteer issues, liability issues, not a lot of places for GCP so L.A. developed plan that you could not join GCP unless you had good attendance, no aggression, pitched to Phil Philbin (former head of Aspire) and GCP was started at Seven Hills41:40 First event was a chili cook off, building community relations, thank firefighters, get constructive feedback, also hosted Friendsgiving, kids did all the work43:44 GCP-you do nice things for other people without expectation of anything in return” You feel good when you do good things, and it will come back to you46:32 Info on finding GCP, see above, no requirements for joining, Leigh Anne's rules0deal with circumstances, weather, not for faint of heart, hard work49:26 Jack's response to GCP amazing. “A taste of success” from Better Off Dead

Driving to get her daughter on Halloween, Jill gives an unplugged, unedited monologue, on the energetics of Tuberous Sclerosis Complex related to her personal lived experience. How considering and understanding "energetics" applicable to many chronic illnesses, -the frustrations, joys, the feelings, thoughts and emotions that are involved are equally, if not more important than to that which we can easily see, and apply logic and clinical principles. Gahhh! There's so much more that we don't tap that would help. Help empower the entire community realize their own strength and what we are walking through daily, what we have learned and what we know. Creating a partnership with those in the system upon whom many must currently depend for care. She discusses the importance of being present, how challenging this can be, and how using your intuition can be the gateway to presence. Overall, how incredibly important it is to consider the energetics of chronic illness including family dynamics when navigating one's role as an affected individual, parent, or caregiver. Love to all out there walking these rugged paths in our very broken systems of care, those within the systems trying to help, and those of us who have disempowered ourselves thinking it would serve a greater good when it has only made us discount what we know in our heart and soul.

Jill Woodworth, host of TSC Talks gives a commentary on the notion of "finding a cure", which is the tag line for about every chronic disease, and how this notion often clouds the less than loving motives behind the industry, corporations, non-profits, medical system and more that extract energy, like a battery, from those for whom they claim to serve. There is always information to which the masses, those affected, and their entire support collective are not privy, which would allow for more light, more ways of figuring out how to genuinely and wholistically find a cure and at least improved quality of life along the way. Hold onto your hearts people, don't judge another's path, no matter what and love yourself if you do. NO matter what. Stay tuned for more content! https://tsctalks.com

Jill Woodworth, host of TSC Talks gives a commentary on the notion of "finding a cure", which is the tag line for about every chronic disease, and how this notion often clouds the less than loving motives behind the industry, corporations, non-profits, medical system and more that extract energy, like a battery, from those for whom they claim to serve. There is always information to which the masses, those affected, and their entire support collective are not privy, which would allow for more light, more ways of figuring out how to genuinely and wholistically find a cure and at least improved quality of life along the way. Hold onto your hearts people, don't judge another's path, no matter what and love yourself if you do. NO matter what.Stay tuned for more content! https://tsctalks.com

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

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

Cecilia Pratt, reached out via Facebook to share her lived experience of a TSC diagnosis in her son and former husband. She clearly depicts how it felt to receive this heavy diagnosis download in a dermatologists office, based on skin symptoms and delivered with minimal compassion and little information, back in 2005. From here they found a TS Clinic in CA , but again Cecilia was not given the answers she needed about managing TSC and was extremely discouraged. Moving from CA to Baltimore MD, she was finally able to find a clinic and team that was able to offer hope at the Kennedy Kriger Institute. In Part 1 Cecilia gives us a moving account of the inner experience of a mother continually swimming upstream and trying to stay afloat with little support while managing some of the fiercest manifestations TSC can dish out. Intractable seizures, extreme behavior challenges, and IEP non-compliance litigation are just some of the struggles she outlines over the course of these episodes. Cecilia refuses to allow these tidal waves of TSC management keep her down and her forthright accounts of her lived experience are both painful and inspiring. These episodes are powerful, particularly if you've ever felt frustrated with getting support and solid information, struggled with relationship and family misunderstanding and felt alone and isolated. Thanks, Cecilia for your willingness to share from some of your most vulnerable moments to give voice to what many of us have felt as we attempt to maintain a quality of life while dealing with the constant demands of TSC care and management.

Cecilia Pratt, reached out via Facebook to share her lived experience of a TSC diagnosis in her son and former husband. She clearly depicts how it felt to receive this heavy diagnosis download in a dermatologists office, based on skin symptoms and delivered with minimal compassion and little information, back in 2005. From here they found a TS Clinic in CA , but again Cecilia was not given the answers she needed about managing TSC and was extremely discouraged. Moving from CA to Baltimore MD, she was finally able to find a clinic and team that was able to offer hope at the Kennedy Kriger Institute. In Part 1 Cecilia gives us a moving account of the inner experience of a mother continually swimming upstream and trying to stay afloat with little support while managing some of the fiercest manifestations TSC can dish out. Intractable seizures, extreme behavior challenges, and IEP non-compliance litigation are just some of the struggles she outlines over the course of these episodes. Cecilia refuses to allow these tidal waves of TSC management keep her down and her forthright accounts of her lived experience are both painful and inspiring. These episodes are powerful, particularly if you've ever felt frustrated with getting support and solid information, struggled with relationship and family misunderstanding and felt alone and isolated. Thanks, Cecilia for your willingness to share from some of your most vulnerable moments to give voice to what many of us have felt as we attempt to maintain a quality of life while dealing with the constant demands of TSC care and management.

In Part 2 of this 3 part episode, Julie Comeaux gives us more details on the events that happened with her son leading up to filing a systemic complaint as well as having one filed against her. This ultimately led to filing a systemic complaint against the state department of education. She ended up taking her son out of the school system to homeschool. Julie describes the tools she used, including Ross Greene's methods, the decision to start psychiatric medication, and more. Julie exemplifies an example of how educating one's self on special education law, perseverance, patience and grace under pressure, plus faith in her son's competence can affect change. (www.bensound.com)

In Part 2 of this 3 part episode, Julie Comeaux gives us more details on the events that happened with her son leading up to filing a systemic complaint as well as having one filed against her. This ultimately led to filing a systemic complaint against the state department of education. She ended up taking her son out of the school system to homeschool. Julie describes the tools she used, including Ross Greene's methods, the decision to start psychiatric medication, and more. Julie exemplifies an example of how educating one's self on special education law, perseverance, patience and grace under pressure, plus faith in her son's competence can affect change.(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)

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)

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 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)

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.

Previous podcast guest, Dorina Leslie, Interviews host Jill Woodworth on her experience with TSC in her children, impact personally and how this led to her involvement with Marine Corp Marathon TS Alliance, Team TSC as well as origins of TSC Talks podcast, development and motivations.

Previous podcast guest, Dorina Leslie, Interviews host Jill Woodworth on her experience with TSC in her children, impact personally and how this led to her involvement with Marine Corp Marathon TS Alliance, Team TSC as well as origins of TSC Talks podcast, development and motivations.

Kristina Hansson, Occupational Therapist of 25 years discusses her motivation for becoming an OT, Importance of Early Intervention programs, the process of requesting services, her diagnosis of Neurofibromatosis, and much more!

Kristina Hansson, Occupational Therapist of 25 years discusses her motivation for becoming an OT, Importance of Early Intervention programs, the process of requesting services, her diagnosis of Neurofibromatosis, and much more!

This week we explore both fetal cardiology and cardiovascular surgery. The first work reviews a fascinating case report of fetal treatment of cardiac rhabdomyomas in the setting of hydrops fetalis. The second reviews a recent report on LV retraining prior to attempted double-switch operations in LTGA and DTGA. Can one accurately predict 'retrainability' of the LV? Can life threatening rhabdomyomas be treated in fetal life? These are amongst the questions answered this week. Articles: DOI: 10.1056/NEJMc1800352; DOI: 10.1016/j.athoracsur.2017.11.047

This week we explore both fetal cardiology and cardiovascular surgery. The first work reviews a fascinating case report of fetal treatment of cardiac rhabdomyomas in the setting of hydrops fetalis. The second reviews a recent report on LV retraining prior to attempted double-switch operations in LTGA and DTGA. Can one accurately predict 'retrainability' of the LV? Can life threatening rhabdomyomas be treated in fetal life? These are amongst the questions answered this week. Articles: DOI: 10.1056/NEJMc1800352; DOI: 10.1016/j.athoracsur.2017.11.047

22 year old with tuberous sclerosis complex discusses move to shared living

22 year old with tuberous sclerosis complex discusses move to shared living

Jill Woodworth chats with her son Jack, age 14, about what it's like to have TSC.

Jill Woodworth chats with her son Jack, age 14, about what it's like to have TSC.

Mary Ellen Lacy talks about the end of high school and beyond with Mom.

Mary Ellen Lacy talks about the end of high school and beyond with Mom.