Podcasts about Mitochondrial disease

In today's episode with Dr. Molly Maloof, you'll hear us take a deep dive into: 1. Dr. Maloof's book “The Spark Factor” 2. The basics of mitochondria and how they help your body 3. The necessity of active living 4. How Mitochondria can help during Perimenopause 5. Why we all need a healthier relationship with food If you've ever had questions about Mitochondria, you're in the right place! Join Dr. Carrie Jones and Dr. Molly Maloof for an exciting conversation about Mitochondria and its wide-reaching impact on our mental state and the health of our bodies. Dr. Maloof talks us through her insights of how lifestyle changes, including diet and exercise, can have an effect on our Mitochondria - and how those effects can then, in turn, affect us. The conversation also covers the Mitochondrial impact on perimenopause and fitness as female bodies get older, and how blood sugar levels also play a part. Order tests through Rupa Health, the BEST place to order functional medicine lab tests from 30+ labs - https://www.rupahealth.com/reference-guide

Lizzie Eastham and Sam Rickard present Studio 1 - Vision Australia Radio's weekly look at life from a low vision and blind point of view. On this week's show “Melissa” Lizzie talks to Melissa.  Melissa has a rare form of Mitochondrial Disease which has meant she lost her sight over a short period.  She talks about the troubled diagnosis and learning to cope with rapid Vision Loss.  Studio 1 welcomes any input from our listeners. If you have any experience or thoughts about issues covered in this episode or believe there is something we should be talking about. EMAIL: studio1@visionaustralia.org or leave comment on our facebook page: https://www.facebook.com/VARadioNetwork Thanks again to Melissa for sharing her story. Vision Australia gratefully acknowledges the support of the Community Broadcasting Foundation for Studio 1. Picture Caption: Black and White photo of traffic lights.See omnystudio.com/listener for privacy information.

Join Dr. Stephanie Holmes podcasting from the 2023 Converge Autism Conference with conference speaker Dr. Richard Boles. Dr. Boles joins her for an in-depth discussion about how energy metabolism, when not working right, can lead to many disorders, including Autism.About Dr. BolesDr. Richard G. Boles is a medical geneticist and a pediatrician who specializes in mitochondrial medicine, functional disease (including cyclic vomiting syndrome, other atypical forms of migraine, and chronic fatigue syndrome), and autism spectrum disorders. His expertise stems from decades of both clinical work and research at a major academic center, as well as from his most recent experience in cutting-edge biotechnology and genomics. He uses an innovative and integrative approach in both diagnosis and treatment to best serve his patients. Dr. Boles leads the NeuroGenomics program at NeurAbilities. Patients, physicians, and other healthcare providers can consult with Dr. Boles directly about reanalyzing previously done genetic testing results, advice for managing neurometabolic disorders, or obtain guidance on choosing and interpreting genetic testing. Neurogenomics can help to unravel the biological causes and contributions for many diseases and disorders, as well as provide vital information for changing clinical management, including:Mitochondrial Disease and DysfunctionAutistic Spectrum DisordersNeurodevelopmental Disorders and Intellectual DisabilitiesChronic Pain, Fatigue, and Headache DisordersEpilepsy/SeizuresUnexplained and Undiagnosed DisordersAnd Much Morehttps://neurabilities.com/our-team/staff-bio-richard-boles-md/https://www.neuroneeds.com/https://neurabilities.com/our-team/staff-bio-richard-boles-md/https://cnnh.org/wp-content/uploads/2018/07/NeuroGenomics-Boles-2018-web.pdfDisclaimer:When we have guests on the ASR podcast, they are recognized for their expertise in autism as advocates, self-advocates, clinicians, parents, or other professionals in the field. They may or may not be part of the faith community; having a guest on the broader topic of autism does not reflect complete agreement with the guest, just as many guests may disagree with our faith perspective. Guests are chosen by topic for the chosen podcast discussion and are not necessarily in full agreement with all beliefs of the chosen guest(s).

Liam has mitochondrial disease, there is no cure. Liam is the first patient in North America to receive an experimental drug. His father Kevin talks about his son.

Check out our information-packed conversation with a co-founder and researcher representing MitoCure. This nonprofit exists to educate communities about Mitochondrial Disease and to generate financial support for the most promising research for a cure, by providing 100 % of all donations directly to research efforts around the world. Learn more about the cause, the important work being done to find a cure, and we'll invite you to a cool fundraiser at the end of September to benefit the cause.

Check out the first part of a mini-series featuring RVNAhealth - a private, nonprofit organization serving nearly 3 dozen neighboring communities. Hear how RVNAhealth has been providing exceptional home and community health care services, supports public health and safety, and has promoted the highest quality of life for over 100 years.   Then - if you live on or anywhere near the Naugatuck river, you are potentially impacted by the detrimental environmental harm being caused by the Kinneytown Dam. So we're connecting with the Naugatuck Valley Council of Governments to get the details you need to know, and inviting you to be part of the solution at an important public info session next week that will be mapping out the dam's removal process. And we'll closed with an information-packed conversation with a co-founder and researcher representing MitoCure. This nonprofit exists to educate communities about Mitochondrial Disease and to generate financial support for the most promising research for a cure, by providing 100 % of all donations directly to research efforts around the world. Learn more about the cause, the important work being done to find a cure, and we'll invite you to a cool fundraiser at the end of September to benefit the cause.

As a teenager, Devin experienced what she now describes as mito crashes and thought it was just a normal part of being a teenager. Her older brother led the way to a shared diagnosis of an autosomal recessive mitochondrial disease: mitochondrial DNA depletion syndrome. Devin's diagnosis came as she was beginning to develop an identity as an adult. In college, she found community, support and activism among other disabled students and started identifying as Disabled. Today, as a genetic counselor, she brings her perspective and activism to the subjects of eugenics, disability, and inclusion: “If you're not uncomfortable, you're not growing.” Related Resources Mitochondrial Medicine Society: resources  Mitochondrial Disease Care Network United Mitochondrial Disease Foundation: Teen and Young Adult Virtual Meet-Up Ages 16-35 (weekly) Stella Young Ted Talk “'I'm not your inspiration, thank you very much” Devin on Mito Genetics 101 Devin on Mito Genetics 102 Devin's Ted-Ed talk (No, she didn't choose the title. And it doesn't make sense!)  Connect with Devin Devin on Twitter: @DevinShuman Request an appointment with Devin through the Genetics Support Foundation Wish you could chat with Devin about mitochondrial disease? Every 4th Wednesday of the month, she hosts an hour-long session through Mito Action. Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page. Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club! Do you want to support Patient Stories? You can make a donation online! Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. Looking for a place to collect your family history and share with relatives? Check out the FamGenix app. Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list.  --- Send in a voice message: https://podcasters.spotify.com/pod/show/patient-stories-with-grey-genetics/message

James Hawkins, Braden Hawkins, and I talk about coaching football, Nathan Laws and how he battled Mitochondrial Disease, The Musial Awards, the Rams, creating a feeling of family at work, all roads lead to St. Louis, giving back money and time, living in a city where you don't know anyone, and so much more!   LINKEDIN   MichMash is an open platform for our guests to be heard. The views expressed by our guests are not necessarily the views of MichMash, 100th Monkey, or Mich Hancock.

In today's episode with Dr. Molly Maloof, you'll hear us take a deep dive into: 1. Dr. Maloof's book “The Spark Factor” 2. The basics of mitochondria and how they help your body 3. The necessity of active living 4. How Mitochondria can help during Perimenopause 5. Why we all need a healthier relationship with food If you've ever had questions about Mitochondria, you're in the right place! Join Dr. Carrie Jones and Dr. Molly Maloof for an exciting conversation about Mitochondria and its wide-reaching impact on our mental state and the health of our bodies. Dr. Maloof talks us through her insights of how lifestyle changes, including diet and exercise, can have an effect on our Mitochondria - and how those effects can then, in turn, affect us. The conversation also covers the Mitochondrial impact on perimenopause and fitness as female bodies get older, and how blood sugar levels also play a part. Order tests through Rupa Health, the BEST place to order functional medicine lab tests from 30+ labs - https://www.rupahealth.com/reference-guide

Anesthetic Considerations in Patients with Mitochondrial Disease with Siri Kanmanthreddy, MD

Dr Emma Glamuzina of the National Metabolic Service in New Zealand, describes a neonatal presentation of CARS2- related mitochondrial disease and the diagnostic challenges this brought in a pre-exome/genome era. Severe neonatal onset neuroregression with paroxysmal dystonia and apnoea: Expanding the phenotypic and genotypic spectrum of CARS2-related mitochondrial disease Jessie Poquérusse, et al https://doi.org/10.1002/jmd2.12360

Join Dr. Stephanie Holmes podcasting from the 2023 Converge Autism Conference with conference speaker Dr. Richard Boles. Dr. Boles joins her for an indepth discussion about how energy metabolism, when not working right, can lead to many disorders including Autism.Dr. Richard G. Boles is a medical geneticist and a pediatrician who specializes in mitochondrial medicine, functional disease (including cyclic vomiting syndrome, other atypical forms of migraine, and chronic fatigue syndrome) and autism spectrum disorders. His expertise stems from decades of both clinical work and research at a major academic center as well as from his most recent experience in cutting edge biotechnology and genomics. He uses an innovative and integrative approach in both diagnosis and treatment to best serve his patients.Dr. Boles leads the NeuroGenomics program at NeurAbilities. Patients, physicians and other health care providers will be able to consult with Dr. Boles directly about reanalyzing previously done genetic testing results, advice for managing neurometabolic disorders, or to obtain guidance on choosing and interpreting genetic testing. Neurogenomics can help to unravel the biological causes and contributions for many diseases and disorders, as well as provide important information for changing clinical management, including:Mitochondrial Disease and DysfunctionAutistic Spectrum DisordersNeurodevelopmental Disorders and Intellectual DisabilitiesChronic Pain, Fatigue, and Headache DisordersEpilepsy/SeizuresUnexplained and Undiagnosed DisordersAnd Much Morehttps://neurabilities.com/our-team/staff-bio-richard-boles-md/

You are good at so many things, but you are great at taking care of your kids and don't ever question that. Caregiver to caregiver what you are doing is hard, but you are so good at it.Raising Rare is so excited to share this episode with you. Susan Geoghegan is an amazing mom of two rare babies given the challenge in life of Mitochondrial Disease effecting the FBXL4 gene. Susan's journey into parenthood was not what she had planned, but as a business owner and wedding planner she soon learned that she was going to have to plan things in a much different way and pivoting always had to be an option. In 2016 Susan was experiencing a wonderful first pregnancy that quickly took a turn as she developed pre-eclampsia soon after starting the third trimester. As Susan was starting to stabilize they realized that her unborn daughter was crashing and needed to be brought into this world through an emergency c-section at 33 weeks. She was tiny even for a pre-mie and spent the next 77 days in the NICU. During her stay Susan and her husband were given the news that their beautiful baby had a Mitochondrial disease that effects FBXL4 gene and she was only the 31st documented case worldwide, but also that their was a 25% chance of this being passed to any future children as well. As a family it was decided very early on that those 2-5 projected years would be the best possible, and would be a life of impact. In 2019, Susan and her husband welcomed their sweet son Benji to the world, his diagnosis came much earlier as they had down genetic testing prior to birth. Lorelie passed in July of 2021 after coming down with a common headcold and a realization (and fear) of how fragile their health is as a family. Susan now experiences anticipatory grief as she sees signs in Benji of his declining and things that she recognizes happening with Lorelie that at the time they just believed was common due to her age. For Susan, therapy has helped with the grief but is an ongoing process in grounding and learning.Susan has truly taken on her promise to have Lorelie's life be one of impact and is truly giving back to other caregivers and the rare community. Not only do they raise money for current research at CHOP on FBXL4 gene, but she also started her own podcast, When Autumn Comes, and a foundation, The Apricity Hope Project. Susan's podcast has helped her connect with moms of rare kiddos but also bereaved moms as well. Both her podcast and foundation offer hope to caregivers and help shine a light for them when they are in the darkest parts of their journey. In the first 6 months as an organization, The Apricity Hope Project has sent 75 care packages (described as a package filled with items that you would expect to receive if your best friend was the one sending it), and offers hospital go bags filled with everything you might need to survive an unexpected hospital stay as well as some new and exciting projects that are just getting started.Susan would love to connect, please feel free to check out her website, podcast, or reach her by email.https://apricityhope.org/https://apricityhope.org/when-autumn-comes-podcast/hello@apricityhope.org

In a bumper episode, Professor Shamima Rahman helps to host Dr Rhys Thomas, Lyndsey Butterworth, Dr Amy Hunter and Russell Wheeler in a discussion around the recent Priority Setting Partnership in Primary Mitochondrial Disease. Research priorities for mitochondrial disorders: Current landscape and patient and professional views Rhys H. Thomas, et al https://doi.org/10.1002/jimd.12521

INTRODUCTION: Let's start withthe basics I am 29 and identify as non-binary, pansexual and demisexual. I amon the spectrum and neurodivergent. I also have mitochondrial disease, ADHD,associated mood disorder, anxiety, depression and more. I am however an openbook on everything.  I am deeply engrained in the kink community and alsothe furry community. So I was born and diagnosed with mitochondrialdisease when I was young. Over the course of my life my single mother did herbest but like most parents of those with chronic illnesses she protected me wayto much. When my brothers were born they also were diagnosed with mitochondrialdisease I often joke that my mother hit the lottery 3 boys with mito with notrace of it anywhere else in our family.Having mitochondrial disease has posed manychallenges in my life from school where I had an IEP all the way intoadulthood. I have always known I was different from everyone else and growingup with that knowledge has made life hard for sure. I also decided however whenI was 24 that I was going to stop feeling sorry for myself and not let mycondition define me. It was at this point that I launched Lights Out, BarksOut! Or LOBO! for short. LOBO is a night club event that focuses on beingsex positive, kink positive, body positive, gender inclusive, and creating asafe space for all. When we started we were mostly a party in dc for pups andfurries but we have grown now to be in 8 cities and to include a wide anddiverse group of patrons. LOBO has changed my life and the lives of many otherswho have found their community and safe space through us. We actually as of afew days ago launched our non-profit wing called the LOBO Initiative whichfocuses on LGBTQ+ youth and adults and those with disabilities who need ahelping hand to achieve their dreams. In addition to LOBO I am a full time professionalDJ and producer and I get the opportunity to play all over the world at circuitparties. This however is at great expense to my overall health.  Havingthe Mito and being on the road 24/7 working late hours into the 3-5 am timeslot isn't good for someone with a mitochondrial cell deficiency. As I saidthough I made the decision that I wanted to live my life my way and if thatmeans taking a few years off so be it. IN SHORT:- Professional touring DJ and Music Producer aswell as event promoter (including events geared for kinksters, furries, andthose with sensory issues)  - Non-binary, Pansexual, Neruodivergant (High Functioning Autism), ADHD, Associated Mood Disorder, GAD-Reporter for Switch the Pitch Soccer Covering the USMNT-Founder and COO of The LOBO Initiative Non-ProfitINCLUDED IN THISEPISODE (But not limited to):·     An Explanation Of Mitochondrial Disease·      Jake'sTotally Kick Ass Grandma·      YAYCHOSEN FAMILY!!!·      Jake'sPath To Becoming A DJ·      ABreakdown Of LOBO (Lights Out Barks Out)·      HowJake Helps Other Rise In The Music Industry·      DifficultiesFor Creatives To Get Their Break·      NightClub Events For People With Sensory Concerns·      PupPlay & Furry Community ·      KetamineTestimonial  CONNECT WITH JAKE: Website: https://jakemaxwellproductions.comMixCloud: https://www.mixcloud.com/live/jakeMaxwell/Facebook: https://www.facebook.com/LightsOutBarksOutFacebook: https://www.facebook.com/DjJakeMaxwellInstagram: https://www.instagram.com/lightsoutbarksoutdc/Instagram: https://www.instagram.com/djjakemaxwell/Twitter: https://twitter.com/LightsOutDCTwitter: https://twitter.com/DJJakeMaxwell   CONNECT WITH DE'VANNON: Website: https://www.SexDrugsAndJesus.comWebsite: https://www.DownUnderApparel.comYouTube: https://bit.ly/3daTqCMFacebook: https://www.facebook.com/SexDrugsAndJesus/Instagram: https://www.instagram.com/sexdrugsandjesuspodcast/Twitter: https://twitter.com/TabooTopixLinkedIn: https://www.linkedin.com/in/devannonPinterest: https://www.pinterest.es/SexDrugsAndJesus/_saved/Email: DeVannon@SexDrugsAndJesus.com  DE'VANNON'SRECOMMENDATIONS: ·      PrayAway Documentary (NETFLIX)o  https://www.netflix.com/title/81040370o  TRAILER:https://www.youtube.com/watch?v=tk_CqGVfxEs ·     OverviewBible (Jeffrey Kranz)o  https://overviewbible.como  https://www.youtube.com/c/OverviewBible ·     Hillsong: A Megachurch Exposed (Documentary)o  https://press.discoveryplus.com/lifestyle/discovery-announces-key-participants-featured-in-upcoming-expose-of-the-hillsong-church-controversy-hillsong-a-megachurch-exposed/ ·     Leaving Hillsong Podcast With Tanya Levino  https://leavinghillsong.podbean.com  ·      Upwork:https://www.upwork.com·      FreeUp: https://freeup.net VETERAN'SSERVICE ORGANIZATIONS ·      DisabledAmerican Veterans (DAV): https://www.dav.org·      AmericanLegion: https://www.legion.org ·      What TheWorld Needs Now (Dionne Warwick): https://www.youtube.com/watch?v=FfHAs9cdTqg  INTERESTED INPODCASTING OR BEING A GUEST?: ·     PodMatch is awesome! This applicationstreamlines the process of finding guests for your show and also helps you findshows to be a guest on. The PodMatch Community is a part of this and that iswhere you can ask questions and get help from an entire network of people sothat you save both money and time on your podcasting journey.https://podmatch.com/signup/devannon  TRANSCRIPT: [00:00:00] You're listening to the sex drugs and Jesus podcast, where wediscuss whatever the fuck we want to! And yes, we can put sex and drugs andJesus all in the same bed and still be all right at the end of the day. My nameis De'Vannon and I'll be interviewing guests from every corner of this world aswe dig into topics that are too risqué for the morning show, as we strive tohelp you understand what's really going on in your life.There is nothing off the table and we've got a lot to talkabout. So let's dive right into this episode.De'Vannon: JakeDidinsky is the host of the Lobo, which stands for Lights Out Barks Outpodcast. He runs Lobo nightclub events all across the country, and most of all,he lives his life out and proud. Y'all listen and learn about Jake'scontributions to the kink community, and Jake is particularly interested in PupPlay the Fur Community, which is super cute, super awesome.Learn about Jake's path to becoming a [00:01:00]dj. The ways Jake helps others rise in the music industry and Jake's tips forthose living with mitochondrial disease, which is something that Jake has livedwith all his life. That disease cannot be overstated as many people living withit are not expected to live very long. ,but Jake has defied the odds. He is still alive And he is sohere to help everyone in any way that he can. Please listen and fall in love.with Jake, just as I have. Hello, you beautiful souls out there and welcomeback to the Sex Drugs in Jesus podcast. I hope you all are doing fan fucking taskas myself and my guest Jake Denki are doing. Jake, how are Jake: you? I'm good.I am just happy to have another day on this earth and, you know living thedream one day at a time De'Vannon: hall.Love you Tabernacle and praise. And so y'all is he Lobo which [00:02:00] stands for Lights Out, Bark Out, I believeLights Out Barks Out, I believe is what that stands for. He runs the Lobopodcast and as well, he is a dj, an event promoter and a music producer, and sohe. Living a high energy life, . And today on this we're gonna be talking abouthis medical history.He has something that's called mitochondrial disease, which I'dnever heard from before. He's gonna be telling us about his low boatinitiative, what his nonprofit does, and what it can do for you. So let's startwith your own history. Like what is it you would like to tell us Jake: about yourself?Yeah. So the first thing people will notice about me, I'm surethey're in this podcast and just listen to me, is I'm severely adhd. So if Ijump around a lot, I apologize. In addition to that, I'm also on the spectrumvery proudly actually. So those are two of like my badges of honor, adhd, verymuch so neuro [00:03:00] divergent.As you mentioned, I have the MET Disease that was diagnosedwhen I was I think four. Both me and my two brothers have it with no othertrace of it. And my family, I like to often joke that my mom had three boys andhit the lottery. All three boys have a condition that it's only passed throughthe mother that she doesn't have.So go figure. You know, that's always often the joke. I am adj, I'm a producer. I run light top, barks out the event all over the country.In addition to our logo initiative, nonprofit as well as I am a soccerjournalist have previously worked in politics. I've kind of been all over theplace you know, run an e-sports team.I, if it exists, I will do it. My whole thing is that basicallyI don't know how much time I have on this earth because people of my conditionsdon't typically live to be my age. And so I'm trying to take full advantage ofit and live as much of a life to the fullest as I. I De'Vannon: admire youand encourage [00:04:00] your, your strengththat you have there, that you keep going.So, so you're saying people with your disease don't usuallylive to your age. How old are you as of today? Jake: I am 29. I willturn 30 in in April. April 16th. Yes. I can do this. April 16th, I will turn30. I will be officially gay dead as the kids say. But I am very excited to bein my thirties and looking forward to that chapter.You De'Vannon: should belooking forward to it. Thirties are wonderful. That's when we really solidifywho we are. So how long do people typically live with this disease if, if 29 isso far out? Jake: So it's one ofthose things where it's, it's really like with the mitochondria disease, it'skind of hard to, to put a number on it, right?Because the way I explain it is mitochondria cells are ineverything in the body, right? So when your mitochondria don't work, That meansnothing in your body works the way it's supposed to. And when you have adeficiency where certain things in your body might work and other things maynot, it's very hard to follow a [00:05:00] pathof how that condition may go.So there's really not one person who has my condition, it hasthe exact same symptoms as anybody else. I often compare it to, if you take abag of a million jelly bean and try to pick out the same one twice, the odds ofdoing that are slim to none. So on the one hand you have people like me who areless affected but could go immediately plummeting like I was in the hospitalthree weeks ago out of the blue.Or you have people on the other end who are very, very, veryseverely affected who don't make it to V3 or four. And there's a whole bunch ofsub conditions. And as we learn more and more about it with geneticconditioning and genetic testing, like we are able to start to pinpoint itmore. But essentially it's one of those things where, It's really kind of acrapshoot because you just don't know.You just, it, it's, I was hospitalized with a minor virus thatspread, that nearly took me out and that was terrifying. And it's somethingthat, you know, it's one of those [00:06:00]things where you just kind of, you never really know with my condition, andthat is something that weighs on you a lot as a.Hmm. De'Vannon: Okay. Sotell us like, you know, scientifically, you said that the, the mitochondriadon't work or there's not enough of 'em. Tell us exactly like your definitionof mitochondrial Jake: disease. Yeah,so with the mitochondrial disease, the scientific definition is essentially ifyou have a deficiency within your mitochondria cell, the mitochondria cellitself, then you have a mitochondrial disease.Within that, there is a much broader spectrum of which one youhave. It can go, It is a very wide ranging spectrum. I think there's like 67,68 different sub conditions of mitochondrial disease. With myself, essentiallythe, the most common thing that almost everyone of a MIT deficiency has is anenergy deficiency, right?So right out the gate mitochondria produced like 96, 90 7% ofthe body's. So if they're not working right, you're already starting off of alow energy. And having a [00:07:00] low energycan lead to other things like having a weak immune system. And then you getinto things, like I said, every single organ, every single part of your bodyhas mitochondrial cells in it.So if your cell mitochondrial cells aren't working the way theyshould be you're gonna have deficiencies in those org organs. So as an example,I had a feeding tube from the time I was like 13 to the time I was 22. I, whenI was 13, 14 years old, I was like 56 pounds and four feet tall. I wasdiagnosed failure to thrive.They had tried everything and I was eating like a machine, butI was metabolizing things so quickly that the food wouldn't like do anything.It would just go right through. Right? So I had a feeding tube, and because ofthat, that's a lot of where my ADHD and my autism comes from. The mitochondriaGIS use, gastritis, gastroparesis, kidney stones since I was 13.All, all this bumped up, all stems traditionally from themitochondria disease as a baseline. Well that's De'Vannon: like,that's like a lot. That's like fucking a lot. Like fuck. [00:08:00] I looked up real quick and I saw thatabout one in 5,000 people both in the United States and globally have thisdisease. Jake: Yeah. And a lotof times it goes undiagnosed because a lot of doctors don't know what it is.So like most doctors, when I say mitochondrial disease, thinkI'm talking about multiple sclerosis, which are two very, very, very, verydifferent conditions. I mean, they couldn't be further apart. One is very muchso brain related and one is very much so body oriented. You know also I'veheard people say, Oh my, that must be muscular dystrophy.That's another one. Closer. But not exactly the same. I havebeen guilty myself of walking into the ER and being like, Yeah, I just havemuscular dystrophy because if I say me disease, I've had doctors look at melike I'm making something up. That has happened to me in the ER multiple times.I went in to actually.But I was admitted to the hospital the first after I saw, thoughtI was just there to get opioids because I was making up something that he'dnever [00:09:00] heard of. And that was a wholewonderful experience where I was like, Dude, no, I'm here because I'm in painand don't wanna be on opioids. Please don't gimme opioids.This is a real thing. You should know this. You're a medicalprofessional. I'm like that. A son of a bitch, , right? Like there's nothingmore infuriating than walking in. Hospital and them being like, Yeah, we don'tthink this is a legitimate thing. This is like, we've never heard of it can, orlike, having you, I don't mind having you explain to a doctor my condition.I usually just walk in with a binder now that I just like handthem. I'm like, Here's everything you need to know about my condition from likemedical specialists in my, in my hoop, Specialize in medo. Just read this andcall them if you have any questions. Because at this point, like I'm so tiredof giving the spiel to these doctors that it's just, it's frustrating andoftentimes they just don't want to hear it.I had to tell the when they were giving me my scope in thehospital to check my stomach. I'm like, You gotta make sure you don't gimmelactic ringers. I will have a reaction. And the nurse looked at me like I hadthree heads because most [00:10:00] patientsdon't tell on theirs that they can't have lactic ringers or even know whatlactic ringers are.So the fact that that was mentioned is just kind of one of thethings that I've been doing for so long. It doesn't phase me anymore. Okay. De'Vannon: And then Iread where you have an had an IEP all the way through adulthood. Yes.Adulthood. And I'm assuming that stands for an individualized education Jake: plan. Yes.So one of the things that is actually very dear and important tomy heart is special education. I intend to run for school board at some pointin my life. I think that people with disabilities need more representation onschool boards from those who have gone through the special education program.I had an iep originally, they wanted to give me a 5 0 4 plan, Ibelieve which is the alternative. But my mother made sure was an IEP cuz shewas a lawyer and knew the system, which is unfortunately something that a lotof kids don't have access to. But that is part of the reason I wanna getinvolved.We'll come back around to that. But I was on an iep originallythey wanted to hold me back in third grade cuz I couldn't write [00:11:00] cursive and that was a whole thing. Theygave me a bunch of. They came back and they said we can't hold this kid back.He's reading at a college level. He's writing at a college level.We should actually skip him ahead of grade. And that was like acomplete whirlwind. So yeah, but the IEP was literally one of the things thathelped me get through school. I actually had to go to three to three differenthigh schools before they finally figured out a system that worked for me.When I was at my first high school, I was getting like D's andF's, but they couldn't figure out why, because I was getting perfect scores onthe state test in Virginia and I was getting like, perfect scores on all myexams. And the reason was I wasn't doing the homework cuz it bored me. Itwasn't challenging enough.And so I just was like, I'm not gonna do it. Like it doesn't, Idon't get anything from this. So I would just like do the exams and then notbother up the homework cuz I knew most of the material. Then they moved me to asecond school where I had a teacher tell me that I couldn't go on a field tripwith my journalism class because she didn't wanna be [00:12:00]responsible for a medical condition.Because she didn't think I could ride the metro for an hourwith kidney stones, which was a whole thing. And my mom said, Uhuh, we're notdoing this. Like we're gonna, we're gonna find a different place cuz this isnot like, acceptable. And then finally I arrived at Falls Church High School inVirginia which is where I ended up graduating from and will always have aspecial place in my heart, which is why I continue to go back there and visitand get back to the school.But there they kind of realized that they had to create almostthis alternative like, plan to help me, I guess, or I guess make it moreaccessible for me, right? Because what ended up happening was I was doing allthese classes and I was, I was getting, like I said, perfect scores and I waseventually they came up with the quantity or quality versus quantity.Which meant that if I could prove that I was getting thematerial, it wasn't how much work I was doing versus the qual, the quality ofthe work I was doing. So at one point [00:13:00]during my senior year, we ended up with the situation because I started inMaryland that I had to take world history. I, and in Virginia, that is afreshman class in Maryland, that is a senior class.I at that point did not want to spend an entire school yearsurrounded by freshmen. Not that I had any problem with it, it was just thatfor me, with being on the spectrum of a bunch of other issues, I was having areally hard time connecting with the freshmen, being older. And also I hadalways had a hard time kind of in school connecting with people my own age.I often spent most of my lunch periods hanging out with thestaff and teachers. So they allowed me to spend that period with my teacherfrom the previous year in us. And, you know, helping him with grading papersand teaching US history and whatever world history had a test, I would takethat test and I would pass it.And that was kind of how they allowed me to navigate my senioryear. Most schools wouldn't have been okay with that, but in this situation,they realized [00:14:00] that if they weregonna fail me because of this, it would've, it would've made no sense becauseat the end of the year, I got a perfect score on the state test, which issomething that should be eliminated altogether because state testing is a jokeand a massive fraud.And realistically, is it the way we should be measuringpeople's success? But that's a whole nother story. Mm-hmm. . De'Vannon: Wow. Thankyou for going into such great detail with that. I appreciate it because thoseare the sort of the, that's the sort of information that helps people. So in myresearch of you, I, I came across where you felt like your mom protected youway too much because of this chronic illness.I got the sense that. Maybe other parents do the same sort ofmaybe like overprotection thing. So I wanna know like what advice you wouldgive both to young people who have this disease and also to the parents ofyoung people who have this Jake: disease. Yeah.So I think first and foremost I should acknowledge that [00:15:00] while my mom and I don't have the world's bestrelationship, I acknowledge that she did the best that she could, right?She had three boys, all of a chronic illness that she had noexperience with as a single mother. And I respect the hell out of the fact thatshe did the best that she could in the circumstances that she could. And welived a relatively comfortable life growing up. And I will always have thatrespect for her, right?That that's never gonna go anywhere regardless of how strainedour relationship is. That being said, I think that it's important not just forparents of people with mito, but for parents. I'll start their parents,especially of kids with chronic illnesses, to understand that. You know, at acertain point in time, you're not gonna be there for your child anymore, right?Like, at a certain point in time, your child's gonna have to goout into the world in theory and figure it out on their own. And if you protectthem to a point where they get there and they're so used to people doing thingsfor them that they don't know how to handle themselves, it can create massiveroadblocks and relearning experiences that [00:16:00]put them behind the eight fall.Like I had never borrowed taxes previously up until a coupleyears ago because I had always been claimed as a dependent, and then all of asudden I wasn't a dependent and I had no idea how to do it. And it was likeincredibly overwhelming and incredibly alarming for me. And that was somethingthat I legitimately had to teach myself because I just had never even occurredto me.I think that the, the instinct just for parents in general isto protect, right? Because this is, this is someone, this is your child, right?Like you want the best for them, and you're afraid sometimes to take your handsoff the wheel. . But I think that you have to trust and find the balance ofletting your kid going, go out and fail and learn from that experience.But also being there to pick them back up when they do. Becausewhat I'm not saying to do is just push 'em out the nest and say, Okay, figureit out. But I'm also not saying like, to protect them to a point where theyhave no idea and think the world is this perfectly welcoming place to peoplewith disabilities because the reality is the world is really hard for peoplewith [00:17:00] disabilities.It just is. It is not a nice world out there at times. Andthat's something that I think a lot of kids with chronic illnesses, when theybecome into adulthood, find out the hard way. As for children and those teens,especially young adults going through this trying to find their independenceand expressed that they can do things, You know, the way I finally got my momto get it was just by demonstrating that I was capable of doing things.And eventually, if she really was adamantly against somethingand I really thought I could do it, I would just do it. And. At the end of theday, it may have led to some strain, but ultimately in the end, she understoodafterwards that I was just trying to show that I could, I could complete what Iwas trying to set my mind to.You know, she was pretty adamant against me becoming a DJbecause she didn't think it would be good for me with my medical condition. Andso because of that and because of my dad previously being a DJ and [00:18:00] thinking it would be a really hard worldto navigate for someone on the spectrum and all these other things, she did notwant to get me DJ equipment when I was younger.So I went on and bought my own. And then three years later shecame to see me play. She was like, Wow, you're really good at this. Like, youshould be doing this professionally. I'm like, I am, should. I've been tryingto tell you for the last three years is that I, I'm good at what I do and I'mokay with the trade off that it affects me medically because I make a bunch of peoplehappy and that's okay with me.But I think that not everybody has the ability to advocate likethat, Right? So, I would just say if you are a, a teen or a young adult outthere and you're saying, Man, I really wish my mom or my dad would like justget, get this point through their head. Just sit them down and be like, Look,at a certain point, there's gonna come a time when you just can't protect meanymore and I need to know how to navigate the world.And I think having that come to Jesus moment with them willreally, really help [00:19:00] open their eyes.So De'Vannon: the, thestrain that you spoke of between you and your mother was, is that the primaryreason there was strain because, you know, you were getting away from hercontrol and it sounds like she wanted what she thought was best and you had adifferent point of view and maybe she took that personally.Is that what, Was there something else that strange y'all evenfurther? Jake: I think a lotof it came down to the fact that she ultimately, Wanted to, wanted what wasbest for me in her eyes. And I wanted what was best for me in my eyes. And Iwas the oldest, right? I was her first born. So automatically she's gonna bethe most protective because she hadn't done it before.And traditionally parents who have multiple children, the firstborn is often told like, No, no, no. Like very protected. But then the secondand third or however many kids come after are often allowed to do things thatthe first born may not have been allowed to. Like I wanted to play in middleschool.I was told no, but my brothers both joined band in middleschool. And unfortunately growing up, it's [00:20:00]not as big of an issue now, but growing up there was a lot of resentment therebecause, well, why are you allowing my brothers to do the things you told me Icouldn't? But as I grow older, I kind of understand and try to piece togetherthose decisions and it starts to make more sense to me.But in the moment it created a lot of heat and strife. But alot of it, I think, did come down to the fact that yes, she. Wanted a lot ofcontrol, wanted to kind of in her mind, this is what's best. You know, I knowwhat's best, like I've done it. And a lot of it came down to me feeling like Iwas never quite good enough to live up to her expectations.And that kind of created a lot of headbutting where you know,being on the spectrum, a lot of these ideas kind of started fill in my head andwhether they were true or not, that's what became the image of my mother in mymind. Now we have come a long way since then. She is very supportive of mycareer now.She is very supportive of me now. She really does the best thatshe can, but as my fiance says, I think that she [00:21:00]is at the point where she just wants to be my, like, best friend and sometimesnot as much of like that's a point of mother figure, if that makes sense. WhichDe'Vannon: one wouldyou prefer? The best Jake: mother, or doyou want both?I mean, every kid wants to have that relationship with theirmother, Right? Where it was like you know, where. It's mom, right? Like I cancall mom and have her do cartwheels because I'm playing in New York City like Iwas last week. And you know, the reaction I got was, yeah, that's kind of cool.Okay. As opposed to like this overwhelming beaming of pride.For me that was a very big moment. And so I think there'salways a part of me that will want that relationship. But to understand thatyou have to go back to the relationship I had with her mother, my grandmother,which was, she was my best friend. She was absolutely, without a doubt theperson I was closest to on this earth.I came out to her first when I was like 16 and she's like,Yeah, okay, let me take you to the sex shop. Like let me help you. [00:22:00] Like if you need a place to, you know, doextracurriculars with people that's not your house, that's fine. You can do ithere. Like Grandma was the shit, like grandma used to have gay parties at herhouse all the time when she was younger.Grandma used to have all the kids in her neighborhood, but mymom and my uncle were younger, come over and party in her basement so that ifthey wanted to do drugs or something, they could do it under the supervision ofa, of a adult. And if they, something happened, she would rather to thehospital and all the parents in the neighborhood were fine with this cuz they'drather them be doing it under the supervision of somebody than doing it out onthe streets.And so these underground parties would just happen at mygrandma's house back, back in the day. And so she was literally everything Iaspired to be. She would give you the shirt off her back. I mean I very much soam my grandmother's child. And I think a lot of that bugs my mother in a waythat we are not as close as I was with, with my grandmother.But that was just because, you know, [00:23:00]grandmother, we call her, my mom and I were just incredibly close. We went toflyers games since I was a kid. We would talk sports. We often joked about theeulogies we would give at each other's funeral because that's how close wewere. If whichever one of us passed away first, like we had a very, very strongdynamic.She would not date somebody without my approval. Like it wasjust, she was like, Okay, like I, she's like, I need you to meet my grandsonand if he doesn't like you, then like, it's not gonna work. Like we were justthat close. It was that kind of a strong bond that some people just couldn'tunderstand.And I truly believe that even though she's no longer here in inperson, she's always with me in spirit. In fact, I always like to tell the. Andwhen she passed away, everybody assumed I would be devastated. I figured I'd bedevastated. But I went to the hospital, she just come outta surgery. She was ina coma, and I, I held her hand and I was like, Listen, like you've been througha lot in your life, girl.Like, you know, it, it's, it's okay. Like you don't gotta keepbiting this if you don't want to. Like, I will be okay. You will, you will be [00:24:00] okay. Like, I trust, I trust that we'regonna be fine, but if you feel like it's your time to go, then you know I'll beokay. And she squeezed my hand and I saw a tear come down her eye and I waslike, Okay.I knew that that's what we were doing. And I looked at her andI said, Just wait till I get back to your house before, before like anythinghappens because I can't be in the hospital. If you passed away, I will, I willhave a breakdown. And I drove back to her house and then I got the call that asI walked in the door, she had passed away.And then that. I had a dream where I, where she was there andwe spoke and we just spoke for hours and hours and hours. And she explainedlike, Look, I just want you to keep living your life. I don't want you toderail everything. Like, you know, this is what I need from you is to not stopliving because I'm never gonna not be there.I'll always be watching you. And then I was fine the next dayand I went about my life. Yeah, I was, I video1709663557: was De'Vannon: gonna askyou if you ever see her in your dreams because, you know, I see my grandmotherand my dreams, particularly in times of [00:25:00]stress and trouble and I had that strong relationship with my grandmother too.She, when I was a little crossdresser, running around at aboutfour or five years old in my, in an oversized shirt, one of my mom's belt andmy mom's little two inch pumps. You know, Granny would let me do that and she'dkeep a lookout in case my parents came back and give the signals I can get backin my boy clothes.And so, I'm here for the Grannys who watch out for the littlegay grandkids running around when the parents are too fucking stiff to get withthe fucking program. So you, it's just the most mindboggling thing. You know,grannys are born like the twenties and thirties and you would think people bornmore recently would be the more open minded ones, but they're just not.And so, so then your siblings don't necessarily have thisstrained relationship with your mom because she was more lenient on Jake: them. Yeah. Somy siblings actually both live out in California with my mother currently. I donot, I live about as geographically far away as I can [00:26:00]be on the East Coast.And you know, I think that, yeah, there, there, there's somestrain there, but not nearly as much as on that as we have. I actually don'thave the world's greatest relationship with my brothers either. In a lot ofways I explain that my brothers are very much like my mother. They're very typeA, they're very materialistic.Which is not, you know, you know, a bad thing in itself. Ifthat's what they are, that's what they are. Whereas I'm very much like mygrandmother, which is very type C. There is more than one right way to dosomething. Like if there's a start line and the finish line, how you get theredoesn't matter as long as you get there.My mother and my brothers, there's a start line and the finishline is really only one correct way to get to the finish line is how I kind oflike describe it. You know, to me my life has been a, a struggling journey,right? Like it's been, get knocked down, climb back up, get back down, climbback up. But the point is I always get back up and manage to get across thefinish line.Whereas, you know, in I think my mother and my brother's eyes,it's get back, get knocked down, but then go this way [00:27:00]as opposed to, you know, I'm like, you know, dude, a bunch of circles fall downa bunch of times, but I got there. But yeah, my brothers and I are starting todevelop a better relationship now.It. Great. I'm one of them is better than the other. They'reactually twins. So you know, there was always that to contend with. But yeah,I, I really am actually not close with a lot of people in my biological family.I do have a very close chosen family which, you know, we, in this community,very much so value, but as far as my biological family, I'm very close with mybiological father, but like not anybody else.De'Vannon: I am herefor all of the chosen family. Fuck this blood relative Jake: trauma andfamily . De'Vannon: The bloodrelatives can be very, very bad for your health. Y'all pick you a betterfamily. Do not have to contend with them. Blood relatives. Congratulations on the engagement. I heard you mentionedfiance. Jake: So actually funstory about that.[00:28:00] We actually had todo it twice. The first time I decided to do it at a pride party at Lobo. Wewere planning to do it the following month, but my mom actually got very upsetthat we didn't call and get her permission to get engaged and that she wasn'tthere. So she flew in the following month to Lobo and we did it all again sothat she could be a part of it.That is literally what we're dealing with which is not a badthing in itself. I get that she wanted to feel like she was involved, and I getthat it was a big deal for her. Her oldest was getting engaged. She's verytraditionalist in that way. I, you know, to me, I didn't really think it was abig deal in 2022 to have to call and be like, Hey, I'm getting engaged, youknow?But. I guess she felt she should have been informed and that'sfine. You know, And her, when she was my age, that was kind of the way it was.You know, Talk to your mother, talk to your father. Me. I'm like, Screw it. I'mjust gonna do this. Like, it was an auto whim decision at four in the morning.So like, you know yeah.But she did fly in the following month and we did it all againat Lobo in front of 400 people. Yeah. I mean, De'Vannon: [00:29:00] that's cute and all, but you lost me atpermission. Jake: Yeah, yeah. Itwas, it was a choice. It was a. De'Vannon: No, wedon't. We don't need nobody's permission to do the fucks we want to do. Butsee, that's why I'm always preaching for people to get over this addiction tofamily because inherent in blood family is a lot of control and a lot ofassuming that this person in the family or that person in the family cannot dothis unless we all agree it's good or something, some kind of bullshit likethat, that I tuned out years ago.I was like, Oh, hell no. . I observed my family. I'm like, Youknow what? All y'all's fucked up each and every fucking last one of y'all don'treally know how to live your damn life, so you not about to try to tell me howto live mine. Even though I am the youngest child. I got better sense than mostpeople in my family, if not them all.you know? So, mm. There there'll be no permission beinggranted. None of [00:30:00] this. I never cameout. I was like, If y'all can't figure it out, then shame on you. I'm doing myfucking life. Deal with it. . I mean, that's it myself Jake: to you bitches.That that's it. Like that, that's a hundred percent. It's, there's a ton ofcontrol.That's why I distanced myself from a lot of them. De'Vannon: Yeah. So Ijust wanted to point out we've been using the word chronic with this disease,y'all. And so what that means is that it's not like, and the opposite of thatis acute, meaning that it would go away over time or through treatment. Chronicmeans that, in this particular case, that there's really no like set cure forthe mitochondrial diseases.Well, so what they were treated with is like vitamins, physicaltherapy, I mean, not any kind of therapy to help the patient feel better, tohave a more comfortable life. They'll treat the symptom as they come up withvarious medications and stuff like that. But like with hiv, which is what, youknow, I have a history of.There's no way to like just say get rid of it. You manage thesymptoms and then you just promote an overall healthy [00:31:00]life. So when we say chronic, that's what we mean exactly. And so his websitey'all is jake maxwell productions.com. Of course that will go in the show notesand then the social media and all of that will be there too.So I bring up the website because this, I want you to tellpeople about that website and about how it all got started. I read where whenyou were 24 that you decided that you were gonna stop feeling sorry foryourself and stop letting your condition define you. So I want you to talk tome about this turning point that happened when you were 24.I want to hear about how your mind was before, cuz it soundslike you were in some. Pity party or a state of low self-esteem or feelingsorry for yourself or something like that, which can happen to us when we getsick or, or you know, we, or when we're fighting these uphill battles. So talkto me your mindset before you have this revelation at 24 and then Jake: after.Yeah. So, you know, [00:32:00]to understand that you kind of gotta go back to like when I was 18, it's alittle bit of a journey, right? So I had all these aspirations as a kid of allthe things I would be doing with my life. And, you know, a lot of them I hadachieved, like, I worked, started working in politics when I was 16.I was on a presidential campaign, I was on a senate campaign, Iwas on a congressional campaign. Like I had done all this stuff by the time Iwas 22. In fact, in 2016 I worked as a presidential and was like the youngestone as a field director in Virginia. So without a college degree. So I had, Ihad like accomplished that I did what I wanted to do on that front.And then, you know, 2016 happened and the whole world justkinda. Got flipped upside down. And I was not happy with the state of the worldand I was unhappy with where I was at with my life. I was going through thissituation where my grandmother had just passed away. And even though I was notreally affected by it as much as I was there, there was some lingering effects,obviously from losing that [00:33:00] strongconnection that I had.And I kind of, you know, was doing this DJ thing. I had, youknow, actually I've been in a kink relationship, not a, not a dating one, but akink one that it just ended and it ended very, very, very badly. And I was justlike, you know, I'm unhappy. I have this condition that's gonna kill me. Like Ihave, this is what was going through my mind, not currently, but at this timeit was like, I have this condition that's gonna kill me.I'm running into a wall. Like I'm, I don't know how to set pathforward. I haven't gone to college. Like, what, what am I doing? Like, what'sthe point? And. Eventually, like literally I was just lying in bed and one ofmy other friends called me and invited me out to a kink club, ironically, whichis how this story starts.And I was like, I wasn't gonna go, but he didn't really give mea choice. He said, You're coming or we're gonna come pick you up and take youregardless. So it's like, all right, I'll go, you know, what have I got tolose? And I went and at this party I met someone named David Merrill. [00:34:00] And this person was the catalyst for my DJcareer.Over time me and who would eventually become my chosen brother,best friend, and all around, like biggest support for me in my life. Corey, akaPhoenix. He, we would do kink demos at David's party. Corey would like flog me,right? And that, that's how my career started. And then one day I went to Davidwas like, David, can I like just dj?I was like, The DJ's not here. Do you mind if. Just try. And hewas like, Yeah, I mean, you know, it can't be any worse than we've ever had, sogo for it. And I went up there and I'm jamming and I'm having the time of mylife and I get done and I'm like, Man, that was awesome. And he's like, No, no,it wasn't, but you have potential and I can see it in you and I can teach youbecause you have something I can't teach, which is drive.You have drive and determination and I think you can get thereif you get someone in your corner to give you the support and the skills thatyou need. And I'm gonna do that for you. So sure enough, every day for like ayear, I'd go over to David's house and [00:35:00]I'd work on DJing and he'd show me things. And then eventually he startedbooking me at his parties.And then the next thing you know, I'm doing more of his events,not just the one. We moved to another event at another event, and I'm startingto get a little bit of a following, and then we kind of hit the turning pointmoment for me, which is when I get reached out to by a bigger promot. and they'relike, We would really like to book you.We think you're great. We think you're talented, but we don'tlike that you're non-binary and we don't like that. You don't really look likewhat a traditional circuit party DJ should look like. Mm-hmm. because I don'treally have the AB and I'm not like ripped and I'm not, all these other thingsthat traditional circuit parties, DJs at that time looked like and I'm like,Excuse the fuck outta me.The hell does that mean? And they were just like, Well, youknow, we just don't think you'll like, react well of the, probably will connectwith you like some of our other DJs. I'm like, Oh, okay, cool. Holding my beer.So I I looked at Corey and, and my friend piloted time and we start, we startedLobo and [00:36:00] that that's what it was.We, we basically started it because we wanted a safe space foreverybody else who wasn't welcome at these, these circuit parties. So wedescribe Lobo really as like a diverse circuit party. You're, you're not gonnawalk in the LOBO and see a bunch of cookie cutter gs, you're gonna see theeverybody else.And that's what we describe it as. You're gonna see the bears,the kinks stirs, the pups, the furries, you know, your big guys, your littleguys. Everything in between except for that traditional, you know, Abercrombieand Fit case, so to speak is how I describe it. And they come too, but in thiscase, they're not the majority.They're in the minority. And the looks on their faces when theywalk in is what makes it like just that much more special because they, it, itdawns that this is a party for everyone and always will be. But that turningpoint really for me, essentially be, it happened on a whim because I was justlike, you know, I need to stop trying to be what my mother wants.I have to stop trying to be what everybody else wants me to be.And if I really. [00:37:00] To be happy andDJing makes me happy. Why not? Like I am not beholden to anybody else'sexpectations of me. I am not beholden to anybody else's what they want me tobe. I basically was like, this is my life. And yeah, I may have all theseconditions and whatever, and this, that, and the other, but you know what?There are people far worse off in the world than me who aredoing far greater things. And sure, I could sit around and be sorry for myselfand sit in my room and just cry and do all these things, or I can go out and dosomething about it. And by doing something about it, it has now gotten to thepoint where we could start the nonprofit, where we can get back to others whomay need that quote unquote kick in the butt supporting shoulder to get themgoing.Going De'Vannon: Talk tome. I commend your ambition here and for fighting to maintain a positiveattitude, making decisions. I appreciate the mentor who helped to mentor youand groom you into DJing. So talk to me about how you give back. You mentionedlike you go back to your high [00:38:00] schoolfrom time to time to give out.I know Lobo has some sort of youth initiative. So tell me aboutall the ways that you give back. Jake: Yeah, so thefirst and easiest way to say how Lobo gives back is Lobo has a policy that we willnever price anybody out of a party. If you can't afford to come to our party,you just shoot us a message saying, Hey, I need a ticket.And we give you a ticket. It's a no question to ask policy,like we will never tell somebody that you cannot come to a community event. Andthe reason for that is no one should be told, Oh, well, we know how much thismeans to you and we know that you have friends in your community here, butsorry, if you can't afford the $15, you just can't come.It is a literally no question to ask policy. We will give you aticket. Now, if that starts happening every single month, we may have a talk,but essentially the way it is is we buy a block of tickets every month as Loboto just give out the people. We don't ask why we don't ask the policy. I need aticket done.Here you go. Like, that's it. And again, the main reason forthat is because we know the impact this has on people. We made that decision atday one that we were never gonna be the party that was so full of itself that wewere gonna tell people if you can't afford to go too, too [00:39:00] bad. So that's, that's the first thing.And that happens in every city we go to all across the country.At every party we do that is like a non-negotiable. So do we lose money on itsometimes, But it's worth it for us because Community first, that's what ourevents always been about. Recently we also launched the nonprofit which is theLOBO initiative.I believe we officially now have finally, finally gotten ourletter from the irs. I have to check. It's supposedly in the mail, but it'staken them like eight months to officially get back to us cuz they were sobacklogged. But that's why we've been like more quiet about it saying that it'sbeen approved.And so we're starting to roll it out. And the main, the mainfocus of the non-profit essentially is like to focus on LGBTQ specificallyyouth. Adults and adolescents and with a key focus on those with disabilitieswho wanna chase their dreams, but just don't have the financial support or theemotional support to get there.The easiest way I describe it is, you know, one of our [00:40:00] programs is a mentorship scholarshipprogram. You tell us I wanna be a dj, we buy you equipment and give you amentor in that field who will help you. And it's too pronged for this reason.One, getting the equipment is great, but you also need someone to help opendoors for you, right?Because that's how all fields work. It's all aboutcommunication and networking, and you can be really, really talented, but ifyou don't have somebody to sometimes help get you in, that can be half thebattle. If you don't have someone you can call like, Hey, I just got offeredthis opportunity, do you think it's legitimate?That can be a huge thing. So we pair you with a mentor to helpteach you your craft, but then also continually be there to help you along yourjourney. And that's one, when we explain it, what we don't do is give out cashvalue. We give out equipment, we give out classes, we give out basic thingsthat can help people go after their dreams.Because that was the big thing for me. Had I had that supportearlier, who knows where I would be now. Wow. De'Vannon: There wasa time that I wanted to become a DJ and I did go and research it. I would go tolike the Guitar [00:41:00] Center and justdifferent places and try to Google it and find it out. But it is so you, it isnot as simple as it, you know, getting turntables or now, you know, like aMacBook, you know, and putting an app on it and then just going, Hey, I'm gonnathrow a party , you know?You know, it was so, it was so, such a struggle to figure outwhere the fuck do I get started? Okay. So I get the equipment, I startpracticing at home, then where do I go? Do I go knock on doors? You know? Youknow. So the fact that you streamlined this process and. And, and to at leastgive people a chance and they're gonna be those who start, who won't keep downthe path.But at least they could say that, you know, they were given anopportunity, right? In being willing to open doors or people in the industry,you're trying to give them what you got, which is somebody to help to vouch foryou. You know, I, you know, when you started DJing, I wish to the heavens, youknow, to God that we had that in every industry, you know, because there is somuch good talent out there, but it's [00:42:00]so much of it to this day.It's about who you know is like that in the author industry.You know, I'm a good writer, you know, but, you know, and I have a lot of goodstories to tell, but trying to get it out there is difficult because there's nolike, you know, mentor for, you know, for me to do that. So I appreciate thefuck outta that.Oh my God. Like, who knows? Maybe I'll, I'll go to DC orsomething and join your initiative and become a DJ at Laugh . Jake: So, so one ofthe cool things about it is we actually have mentors in all fields. We havepeople who work in the author industry. We have people who are writers,artists, DJs. Like I use DJ as the example, cause that's the easiest way tosay, but we, some of 'em reaches out to us like, Hey, I wanna be a film adirector.We have film editors who do YouTube, who are big YouTube starsand all these other things who will help, you know, teach them and we'll sendthem a camera and we'll be like, Hey, you know, here you go. Here's who youreach out to, you know, talk to them. Our whole thing is basically, if you tellus what you wanna do, we will find somebody who can help you and get you whatyou need.It's, it's really [00:43:00]that simple. And that is why, you know, we believe that it's so important tohave this because it's one of those things where you. There are so many people,like you said, there's so many fields who are ridiculously freaking talented atwhat they do, but they just don't have the monetary support, they don't havethe equipment support, they don't have the mentor to open doors.And so because of that, they fall through the cracks. And thatis what we want to pick up the pieces in because especially in the disabilitycommunity, but across the LGBTQ and really all communities in general, youknow, people slip through the cracks and that's when we have this opportunitywhere we miss so many great, talented people.Hallelujah. Jesus. De'Vannon: It does.Well then we'll talk after the show about what you might or might not do forme. You know, I can't lose anything by asking you know, so I don't like howthey were trying to change you. You know, that [00:44:00]opposition you met for being who? Are, you know, because the only reason that,that, that production company would've reached out to you and told you all ofthis would've been because they had in mind the way that they could change youand make you into a different person.You know? Other than that, there's no reason to reach out andbe like, We love everything about you except for who you actually are. Sochange that and then, you know, we could make this work. I come up against thatin the writing industry because I write very like real, you know, if we'retalking about getting fucked in the ass and come spraying the place andshooting up meth and blood on the ceiling, and then that's what the fuck we'regonna say.We're not, there's no other way to say it cuz of what happenedhappened. But a lot of people are very conservative who hold a lot of power ina lot of different industries, especially in the music industry and it peoplewho, who create very polarizing art, you know? You know, it sucks when yourwork lands on the desk of that conservative bitch, you know, you know, in thepublishing house or in the, you know, be it music [00:45:00]or you know, literary or whatever.Because that person, I've seen them take like an adversereaction to work, whereas had had more liberal person gotten ahold of it, theywould've gotten a point as opposed to clutching their pearls and shit andcutting off their circulation. Now they can't fucking think straight, you know,about what's in front of 'em.So what cities is low in, because when I looked it up, onething, you know, like just what cities? I know you're at least in dc, Columbus,Ohio, Virginia Beach, Norfolk area, Jake: where else?Yeah, so our website is a little bit behind because we're growing much quickerthan one person could keep up of it. But currently we are in Norfolk, VirginiaBeach.That's one. Columbus, DC, Pittsburgh, New York with, have acouple other cities on the, on the way. In addition to some other ones thatwe'll be returning to, but those are the big ones that we're at regularly. Wealso have Richmond coming soon. [00:46:00] Inaddition to Lobo the party, we also have Lobo, the drag show slash drag brunch,which is in New York, Norfolk, and DC as well.Which we do to elevate Queens who just wanna get experience andalso those who are incredibly talented. So we do that. And those, that's wherewe are currently. I can't say some of the other cities we haven't announcedofficially yet, but we do have some more in the wings coming soon. De'Vannon: Okay. I'mtaking a note on that logo drag show.I'll be in New York in November. Jake: Well, weshould, we should talk, we should talk De'Vannon: just thefirst in November, so we'll see. What's going on for sure. So, so the circuitparties, you know, they're only like, The prices I saw were like 10, $15.That's not super expensive to begin with. For what a circuit party could cost.Yeah. . So I thought the pricing was very, very humble and I'mso pleased to hear that you're really going out of your way to reach [00:47:00] for PE people. Do you have like a story ofsomeone who came, came to one of your events or one of your locations? Like abefore I get before and after story. Jake: Oh yeah, I gotplenty.We get, we get messages from people all the time who haveliterally said that our event has changed their life. And that's one of thethings that actually I'm gonna pull one up right now. Sorry. I gotta find itcuz there's one I do like to tell like at the very onset because it was someaningful.That's fine. While De'Vannon: you'relooking for that, I have another question. So in all of these cities, do youhave like an office? Do you have people who work for your organization? Andthen congratulations on officially becoming a nonprofit. Yes. So, so do youhave a physical location? Cuz these parties don't happen like, say every Jake: weekend.So the easiest way to explain it is Lobo, the party is forprofit and the LOBO initiative [00:48:00] isnon-profit. Okay. So Lobo the party, which is where we are in multiple citiesofficially, we don't have offices, but we do have people on the ground in allthose cities who, and we have telegram chats for every city we're in.So people can come and join and find that sets of community forthe city that they're, they're going to. So there's a Lobo Columbus chat, aLobo DC chat, a Lobo Norfolk chat. And these are like just telegrams andmessages that pups use. And what it is, is it's just another way to create thesets of community where people can just kind of come and express themselves.We also have the one community shared for Lobo as all citiesshare it. It is the Lobo Horny Jail chat. You can probably figure out what happenedin that chat. But that is because we don't believe in people being restrictedand expressing themselves. We've never been about that. Like, go on, expressyourself, like, you know, do your thing.So that is a chat for all the cities to come and do theirextracurricular horny stuff with. But that one's always fun to just kind of popin and see what's going on. But yes, we do have people and admins and all those[00:49:00] chats. We also have a communitydiscord where people can go. So that is how we connect with everybody.I'm always reachable. That's partly why I'm so tired is becauseI respond to messages like 24 7. But yeah. One of the things we tell people iswhen we go to a city, we don't just wanna be the party that comes and takesyour money and leaves until we come back. We are all about celebrating andlaying down community roots.And a lot of these cities already have community organizationsoutside of us. So we work with them, with those local organizations to helpthem get funding or whatever we can do. To help elevate their events because wedon't need to have a monopoly on this type of an event that doesn't helpanybody. If they're succeeding, we're succeeding, and that's what we're allabout.De'Vannon: Okay.That's pretty kick ass. So basically since you have a network of people canjust, they do like meetups and stuff like that, they can still physically reachout and text somebody in these various cities if need be. So can find all ofthis at the Jake: website. [00:50:00] All the telegram chats are on the website.We also have a general announcement channel on Telegram, whichhas all this info. We put it out on twitterer regularly and rotation how tojoin the chats. But basically on all of our socials, you can usually find yourway to whatever chat you're looking for. Or if you have the wrong end up in thewrong chat, someone will immediately get you to the right oneBut oftentimes what we see is that people join all the LOBOchats because they just want to, even if they're not anywhere near that city.Oh, how fun. Okay. Do you have that before? I do. So one of the messages we gota couple actually January of this year was from a friend of mine who's becomevery close to me, and the message kind of went something like this.It says real talk. I have to say straight to you. I can't tellyou how grateful I am for Lobo. I only found out about it around a month ago,and it became genuinely one of the best months of my life, arguably the best.I've had a very long history of depression and loneliness. I wasn't exactlypopular in school growing up, being a nerdy, painfully shy, weird kid, and I [00:51:00] was really nose diving this year.Then I ended up being introduced to this community and havedone a total 180 as far as my mental health goes. For the first time in mylife, I felt like I've had a true friend group, and I can't describe howamazing that felt. Put it this way, the day after the December lo, I feltreally strange, and it took a few hours into that day to realize that thatstrange feeling was because it was the first time and I couldn't begin to guesshow long that I woke up about a black cloud on my mind.The sun seemed brighter, My vision was. The world just felt somuch more alive to me as I've reflected on my past what's happened for me, thispath, I realize how much I was doing mentally in 2021, and the conscious of howamazing this December's been like for me, I've come to swear, Lobo has prettymuch saved my life.It was getting that bad for me. I really don't think I couldthank you enough for making Lobo a thing. De'Vannon: Well, I'mhere for all of that. Let me go on ahead and give you a clap and Jake: yes, , and youget messages like that and just like it hits you so deep. Like, I mean, I crysometimes when I get messages like this [00:52:00]because one of the things that is sometimes hard for me to realize is thatwe've created something and I, I often get credited for, but it's me and myentire team and my co-owner and best friend and brother by choice Phoenix.Like we have built this thing from the DC Eagle distinct littleparty in DC into something so much bigger than we could have ever imagined. Andsometimes I especially kind of live in this bubble where I'm not aware how manypeople it's impacting or the impact it's having. And so when we get that memessages like that, it's like, oh my goodness.And at the end of the day, you know, people are always like,Well, why? Like, why even bother keep doing it? And I always tell them thefollowing, which is that, yes, doing Lobo and being on the road every weekendand traveling is terrible for me medically and will probably take a coupleyears off my, off my life.And I'm okay with that. I'm okay with that trade off. And thereason for that is very simple. I am making people's lives better. My team ismaking people's lives better. We are creating a community event [00:53:00] that is impacting the world. And that'sall I've ever wanted. If I was to die tomorrow, I, I could leave a legacy thatwe've changed some people's lives and that's all I've ever wanted to do.And so for me, if you're telling me that I would lose a coupleyears in exchange for saving a couple. Then that's fine. If you're telling methat I can leave the world in this, a legacy in this event that basically willhelp to create, find people of their chosen family, I'm okay with that at theend of the day because that is what I've always wanted to do, is basically livelife like my grandmother and leave the world in a better place than I found it.And right now there's a lot of people leaving the world in amuch fi place than they found it. But if I can just impact one person, then itwas worth it for me. Amen. Everything De'Vannon: you justsaid. I mean, and you mentioned having, you know, fighting the disease andtraveling and you know, and I know DJs don't exactly get off work at 5:00 PM soI know, I know you're worthy for the wee hours.So is there any sort of special thing that you do to keep yougoing? Because [00:54:00] I know you mentionedfatigue, it can be one of the symptoms. So how are, how do you manage thedisease and do all that? You do Jake: Red Bull, ,lots and lots of Red Bull. No the DJ answer is Red Bull and Caffeine pills, butthe actual answer is basically from Monday to really, like Thursday it's sleepand recovery, and then starting on Thursday night it's travel, and Friday andSaturday it's go, and then we start the process over again.That's really what it is. It is draining. It is hard. It isrough. It is not easy with the mito, but at the end of the day, like I alwayssay, it's, you know, the look on people's faces at Lobo and the messages thatkeep me going. It's, it's knowing that we're doing something and. Thatultimately I get to live a life that many people wish they could.And I'm very appreciative for that. But I'm also not mistakenon how many people sacrifice for me along the way to get me here. You are a De'Vannon: gratefulmotherfucker. I [00:55:00] love it. So, toexplain, Jake I read where you do like, you create events for people withsensory issues. I wanna know what sort of sensory issues you speak of and howyou tailor Jake: it.Yeah, so that's something new we are still laying thegroundwork for, but that we have done. And what we are trying to do isbasically create nightclub events for people who, who have sensory issues,sensory overload, loud noises, lights like, you know, we can do. One of thethings that people often say is, and this is especially true in kink andnightlife just for the record, is I can.Make this accessible? Well, sure you can. You just don't wantto, you don't wanna put any extra legwork to get it there. There are times whenyou can't make something accessible. Like if there's only a stairway up, I getthat. But, you know, don't tell me you can't play the music at a lower level ona, on a certain night and not do a bunch of flashing lights.Like that's, that's an easy fix. That's an incredibly easy fix.It's just the fear of alienating your ongoing base is what is preventing people[00:56:00] in a lot of ways with a lot ofdisability accessibility. It's fear of alienating those who might not wantthat. And you can hear I think some of the passion in my voice when we talkabout this, because as someone with a disability, I never want someone to feellike they can't go somewhere because of something that may trigger somethingfor them.So one of

Today, I am blessed to have here with me Dr. Lori Bouchard. She completed her degree in Health Science at Western University and a Doctorate of Naturopathic Medicine (the four-year full-time program) at the prestigious Canadian College of Naturopathic Medicine in Toronto.   Dr. Bouchard founded Inside Health, Ontario's most innovative naturopathic healing center, to help people reverse complicated and often misunderstood conditions such as Lyme, chronic fatigue, Hashimoto's, and infertility. More than a decade later, Inside Health offers a comprehensive range of naturopathic support, welcoming all those who wish to live in optimal health. With a special focus on cancer health, Dr. Bouchard is on a mission to help patients understand the real root of cancer and how gut health, genetics, and environmental factors impact tumor growth.  In this episode, Dr. Bouchard explains why it's a good sign when you get sick once or twice a year. Being sick is one of the ways our body can get rid of the garbage in our cells. Then, Dr. Bouchard dives into all things cancer, including how to support the body, the importance of attitude, and how the cells communicate during this time. Plus, Dr. Bouchard discusses all the different ways you can help the mitochondria. Tune in as we chat about eating the best types of foods with a cancer diagnosis, the connection between stress and disease, and managing sleep. 4 Secrets to Mastering Keto Masterclass. Register For Free Here: http://www.ketosismasterclass.com  Message me on Instagram www.instagram.com/thebenazadi with the word ENERGY to learn more about coaching from me. / / E P I S O D E   S P ON S O R S  Paleo Valley beef sticks, apple cider vinegar complex, organ meat complex & more. Use the coupon code KETOKAMP15 over at https://paleovalley.com/ to receive 15% off your entire order. Upgraded Formulas Upgraded Magnesium & Charge Electrolyte Supplements: http://www.upgradedformulas.com Use KK15 at checkout for 15% off your order.  [05:30] Why It Is Actually Good To Be Sick Once or Twice A Year Most people that have cancer are completely shocked because they never get sick. If you never get sick, then your immune system never has a chance to purge toxicity.  Getting rid of garbage is a crucial thing for our bodies. You should be sick once or twice a year. However, you shouldn't be sick for lengthy periods.  [10:50] The Impact Your Feelings and Attitude Can Have With A Cancer Diagnosis You need to support the body when you have cancer.  Anger is going to make cancer way worse.  When you get a cancer diagnosis, it's a reason to look at your health and healing differently.  One in every two people in their lifetime will get cancer. 100% of men over the age of 80 have prostate cancer. Also, many people die with thyroid cancer but not from thyroid cancer.  Remember, cancer doesn't necessarily have to take your life; it's part of how your cells are aging.  [15:45] Did You Know That Cancer Is A Survival Mechanism?  Cancer is a survival mechanism.  Every single one of our cells has a slew of mitochondria. Each of the mitochondria produces energy. Stress, toxicity, inflammation, and glyphosates are damaging our mitochondria.  Cancer is your body trying to keep your cells alive.  [23:35] How To Support Your Mitochondrial Health  A 13-hour fast will support your mitochondria.  Eliminating toxicity will also help your mitochondria.  Get rid of foods with glyphosates, herbicides, and pesticides. Don't brush your teeth with damaging chemicals. Also, make sure you are going to the bathroom every day. If you are regularly eliminating, then you are not putting stress on the liver. Drinking lots of water will help keep your cells healthy.  [34:30] The Hospitals Are Feeding Cancer Patients The Wrong Types of Foods  Most doctors do not want to engage in a conversation about nutrition and cancer. We need to have a critical talk about fueling the body properly.  When you're in the hospital, they give you foods full of sugar, feeding cancer.  You'll do better with your cancer treatments if your body is in ketosis.  [39:40] Is Prostate Cancer Associated With Sedentary Behavior?  If you're given a prostate cancer diagnosis, they'll put you on androgen blockers to suppress your testosterone. However, Dr. Bouchard thinks people should be moving more. As we age, it's common for most people to sit at their computer all day long and not move. Testosterone declines when you aren't moving.  Dr. Bouchard likes to get men working on a hula hoop. In general, most people do not move around enough.  [42:30] The Connection Between Chronic Stress and Cancer  Fear, anxiety, sleepless nights, and high cortisol can worsen cancer. If lifestyle and food were the same, stress would make cancer worse. When your stress levels are high, your sleep and how you repair at night won't be the same. Living in the sympathetic nervous state is going to trigger cancer cells more. AND MUCH MORE! Resources from this episode:  Check out Dr. Lori Bouchard's Website: https://drlori.ca/ Follow Dr. Lori Bouchard Instagram: https://www.instagram.com/drloribouchard/ YouTube: https://www.youtube.com/channel/UCeZ7h4Zl7M09_NxenSnmCCA/featured Get Dr. Bouchard's Books: https://drlori.ca/services Join the Keto Kamp Academy: https://ketokampacademy.com/7-day-trial-a Watch Keto Kamp on YouTube: https://www.youtube.com/channel/UCUh_MOM621MvpW_HLtfkLyQ 4 Secrets to Mastering Keto Masterclass. Register For Free Here: http://www.ketosismasterclass.com  Message me on Instagram www.instagram.com/thebenazadi with the word ENERGY to learn more about coaching from me. / / E P I S O D E   S P ON S O R S  Paleo Valley beef sticks, apple cider vinegar complex, organ meat complex & more. Use the coupon code KETOKAMP15 over at https://paleovalley.com/ to receive 15% off your entire order. Upgraded Formulas Upgraded Magnesium & Charge Electrolyte Supplements: http://www.upgradedformulas.com Use KK15 at checkout for 15% off your order.  *Some Links Are Affiliates* // F O L L O W ▸ instagram | @thebenazadi | http://bit.ly/2B1NXKW ▸ facebook | /thebenazadi | http://bit.ly/2BVvvW6 ▸ twitter | @thebenazadi http://bit.ly/2USE0so ▸ tiktok | @thebenazadi https://www.tiktok.com/@thebenazadi Disclaimer: This podcast is for information purposes only. Statements and views expressed on this podcast are not medical advice. This podcast including Ben Azadi disclaim responsibility from any possible adverse effects from the use of information contained herein. Opinions of guests are their own, and this podcast does not accept responsibility of statements made by guests. This podcast does not make any representations or warranties about guests qualifications or credibility. Individuals on this podcast may have a direct or non-direct interest in products or services referred to herein. If you think you have a medical problem, consult a licensed physician.

Commentary by Dr. Valentin Fuster

Expanding on their recent editorial, Shamima Rahman, Eva Morava and Tamas Kozicz discuss the doxycycline paradox and why a medication previously thought to be toxic might present an avenue for treatment in some primary mitochondrial disorders. The doxycycline paradox in primary mitochondrial diseases Tamas Kozicz, Shamima Rahman, and Eva Morava https://doi.org/10.1002/jimd.12531

Recently I had the pleasure of hosting two live events, one in Seattle, WA and one in Portland, OR. These events were part of a lecture series called The Brain Body Contract. My favorite part of each evening was the question & answer period, where I had the opportunity to answer questions from the attendees of each event. Included here is the Q&A from our event in Portland, OR. Attend The Brain Body Contract Live Events Los Angeles, CA: October 16, 2022 New York, NY: November 9, 2022 https://hubermanlab.com/tour Thank you to our sponsors Momentous: https://www.livemomentous.com/huberman InsideTracker: https://insidetracker.com/huberman Timestamps (00:00:00) The Brain Body Contract Q&A (00:01:08) Momentous Supplements, InsideTracker (00:01:36) Upcoming Live Events: Los Angeles & New York (00:02:16) What Are the Current Best Practices for Post-TBIs? Thoughts on Hyperbaric Oxygen Therapy? (00:08:03) Are There Effective Ways to Decrease Dopamine When You Get Too Much of It? (00:13:50) How and When to Improve Brain Plasticity if You Have 10 Minutes a Day? (00:17:51) How to Use Supplements to Optimize Health When Career Prevents Consistent Routines? (00:21:09) How Is Social Media Changing Our Brains? (00:25:10) What New Piece of Neurological Research Most Excites You? (00:28:35) Do You Believe in the Wim How Method? Does It Work? What's Happening in the Brain? (00:37:08) Can Red Light Therapy Help Treat Exercise Intolerance and Fatigue in Mitochondrial Disease? (00:40:39) Is It Possible to Over Do Ice Baths? (00:46:10) What Are Your Favorite Brain Hacks for Doing Hard Things? (00:48:25) What Do You Fear? How Do You Manage Fear? (00:50:05) Conclusion Title Card Photo Credit: Mike Blabac Disclaimer

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Join MitoAction and Dr. Mark Tarnopolosky to discuss: What exercises are good for mitochondrial disease and how do we exercise safely? Are there any diets or dietary concerns for patients with mitochondrial disease? What is the current status of the mitochondrial cocktail?

Talking points include: -What does the medical literature say regarding the uses of nutritional therapies in the autism and related neurodevelopmental disorders? -What about the uses of nutritional therapies in functional disease such as pain, fatigue, GI dysmotility, dysautonomia, anxiety, and depression? -What exactly is Spectrum Needs, and how can it be used as nutritional support for the above conditions? -Spectrum Needs beyond the spectrum: What about the use of this product in the average "mito" patient? -How to integrate SpectrumNeeds into a complicated supplement regiment? About The Speaker: Richard G. Boles, MD Dr. Richard G. Boles completed medical school at UCLA, a pediatric residency at Harbor-UCLA, and a genetics fellowship at Yale. For over two decades, Dr. Boles' clinical and research focus has been on changes in genes involved in energy metabolism, and more recently ion channels, and their effects on the development of common functional disorders. Examples include autism, pain syndromes, chronic fatigue, cyclic vomiting, intestinal dysmotility/failure, and depression. Dr. Boles practices the "bedside to bench to bedside" model of a physician-scientist, combining an active clinical practice with basic research into the underlying genetic predispositions leading to the same conditions. He has over 80 published papers, mostly in mitochondrial medicine. For 20 years, Dr. Boles was a faculty member at the Keck School of Medicine at USC and a practicing medical geneticist and metabolic specialist at Children's Hospital Los Angeles. He was a Medical Director of Lineagen and Courtagen, which are/were genetic testing companies. Dr. Boles became involved in genetic testing in order to facilitate the translation of the vast amounts of acquired genetic knowledge into applications that improve routine medical care. Dr. Boles has an active private practice in Pasadena and Aliso Viejo, CA. About half of the patients he currently sees as a physician have one of more functional conditions, especially cyclic vomiting syndrome, other forms of complex migraine, and/or chronic fatigue syndrome. Most of the other half have an autistic spectrum disorder or related condition. His clinical practice is devoted to using information, including genetic testing, to guide options for therapy. His care philosophy, practice, and types of patients he accepts are discussed at http://molecularmitomd.com. A telemedicine practice has just started at https://cnnh.org. Dr. Boles also does legal consulting, especially for those with multiple functional conditions that others are considering fictitious disorder/Munchausen-by-proxy/medical child abuse. Finally, he is the primary designer of SpectrumNeedsTM, a nutritional product with 33 active ingredients designed for individuals with autism or other neurodevelopmental disorders, with an emphasis on assisting mitochondrial function (https://www.neuroneeds.com).

As a follow-up discussion to Dr. Fran Kendall's presentation on "Muscle Biopsy Testing for Mitochondrial Disease", MitoAction welcomes Dr. Steve Sommer of MEDomics to discuss testing for mitochondrial disease using a blood sample. About MEDomics After 23 years in academia, Dr. Steve Sommer started MEDomics in order to apply a revolutionary technology called "NextGen sequencing" to clinical mitochondrial medicine. (www.medomics.com) MEDomics sequences the entire mitochondrial DNA genome thousands of times. That sometimes allows the diagnosis of mitochondrial disease to be made with a blood sample rather than with painful muscle biopsies. MitoDx is a test of unprecedented power for diagnosing mitochondrial genome disease, which is roughly "half the elephant" of mitochondrial disease.

Dr. Mark Korson from Tufts Floating Hospital for Children gives a "crash course" in interpreting lab values! Most patients with mitochondrial disease have faced a page of test results comprised of letters and numbers that would help them understand their current illness if the information made sense. CBC, CMP, LFTs, CPK, OAA and more...join us as we figure it out! CBC CMP Lactic acid pyruvic acid amino acids organic amino acids ammonia electrolytes glucose bicarbonate/co2 metabolic labs CPK LFTs carnitine TFTs: TSH, T4, T3 cerebral folate About The Speaker: Mark Korson graduated from the University of Toronto medical school and completed his pediatric residency nearby at The Hospital for Sick Children. He came to Boston to do a fellowship in genetics and metabolism at Children's Hospital. Following that, he directed the Metabolism Clinic at Children's until 2000, transferring then to Tufts Medical Center's Floating Hospital for Children. He is currently the Director of the Metabolism Service and an Associate Professor of Pediatrics at Tufts University School of Medicine. Besides clinical medicine, a key focus for Dr. Korson is education. He is concerned about the growing crisis in metabolic health care due to the shortage of clinicians available to treat this community. To complicate this situation, there are too few people entering this subspecialty. In the fall of 2007, Dr. Korson launched the Metabolic Outreach Service, for which he has travelled on a regular basis to five teaching hospitals in the northeastern US where there is no on-site metabolic service. The goal is to provide educational and consultative support so that non-metabolic clinicians can learn how to participate more in the diagnosis and management of patients with metabolic disease. A component of this effort is the Patient-As-Teacher Project, which engages patients and family members to participate actively in the teaching of medical students, house-staff, primary care providers and specialists. The Outreach Service is funded by a consortium of corporate and disease foundation sponsors. In addition, Dr. Korson co-directs the North American Metabolic Academy, a one-week intensive course about metabolic disease for genetic and metabolic trainees. NAMA is sponsored by the SIMD, the Society for Inherited Metabolic Diseases.

What is the historical use of marijuana for medical purposes? Are there legalities associated with medical marijuana use? When is medical cannabis a potential therapeutic option for patients with mitochondrial disease? Are there guidelines on dosing and use? Is it true that medical cannabis is for pain and seizures only? Is marijuana addictive, even when used for medical purposes? Have there ever been safety studies published about use of marijuana for medical purposes? Join us with Dr. Fran Kendall to get the answers to these questions and more regarding the use of medical marijuana (cannabis oil) for treatment in mitochondrial disease patients. Georgia just signed into law the use of cannabis oil for a number of diseases, including mitochondrial disease. Several Mito families in Georgia advocated on behalf of this legislation. While 35 other states have passed similar legislation, Georgia is the first state to include mitochondrial disease in the list of disorders to be treated. Dr. Kendall will touch on historical perspective, mechanisms of action, dosing, safety and outcome data. About the Speaker Dr. Kendall trained and served on the staff at Boston Children's Hospital and Harvard Medical School for a number of years. She was the previous 50% owner of a successful genetic laboratory/healthcare provider (Horizon Molecular Medicine), and has extensive experience in the diagnosis and management of children with a wide array of metabolic disorders. She brings this vast experience to her private practice, VMP, LCC, as president and founder. Dr. Kendall is a well respected pediatrician as well as biochemical geneticist, and she has authored numerous research articles on rare diseases ranging from Nieman Pick Type C and mitochondrial disease. As one of the few clinical mitochondrial disease experts, she has a long-term interest in research and clinical aspects of rare metabolic diseases.

MitoAction welcomes psychologist Carole Slipowitz PhD and Tufts Metabolism clinic nurse coordinator Maggie Orr RN M.Ed to discuss the challenges of dealing with a diagnosis of mitochondrial disease. How do you cope with the unpredictable, invisible disease? Any chronic illness can be overwhelming - for a child, a family, or an adult with the condition. However, due to the unpredictability, complexity of symptoms, and uncertain prognosis, a diagnosis of mitochondrial disease is especially stressful...and exhausting. About the Speaker Maggie Orr is the nurse coordinator at the Tufts Medical Center Floating Hospital for Children in Boston; she has 10 years of prior experience with mitochondrial disease patients. Carole Slipowitz has over 20 years of experience as a psychologist; for the past 2 years she has served as a consultant to MitoAction's Mito 411 support line.

Join us this month to learn more about the challenges facing kids and adults with Mito when it comes to nutrition. What are the goals for Mito patients, and how are they different from nutrition goals for the typical population? About The Speaker Abby Usen received her B.S. in Food and Nutrition Sciences and Dietetics from the University of Vermont. She completed her dietetic internship at the Frances Stern Nutrition Center and received her M.S .from the Friedman School of Nutrition Science and Policy at Tufts University. Since gradating from Tufts, she worked as a clinical dietitian/clinical nutrition manager at the Massachusetts Hospital School in Canton, Ma where she specialized in nutrition for children and adolescents with developmental disabilities. Most recently she has been an outpatient dietitian specializing in Pediatric Gastroenterology at Floating Hospital for Children at Tufts Medical Center. A great portion of her time is specifically working with patients with failure to thrive, gastrointestinal dysmotility and mitochondrial disease. She also spent 3 years working with patients having Inborn Errors of Metabolism and is the current Chair, of the Massachusetts Pediatric Practice Group.

Join us with Dr. Sumit Parikh, Director of the Cleveland Clinic Neurogenetics, Metabolic and Mitochondrial Disease program, and past president of the Mitochondrial Medicine Society. Learn more about the 2014-2015 publications based on collaborations and consensus surveys completed by the Mitochondrial Medicine Society. The landmark series of publications is the first to address existing standards of care and most common approaches to diagnosis, use of supplements and symptom management by leaders in mitochondrial medicine around the US. Key points: Mitochondrial medicine's complexity bring unique challenges to physicians The practice of Mitochondrial Medicine has varied from provider-to-provider Patients and families deserve uniformity in regards to diagnosis and treatment The MMS Consensus Project was conceived with this goal in mind About The Speaker Dr. Parikh is the Director of the Cleveland Clinic Neurogenetics, Metabolic & Mitochondrial disease program. His clinical and research interests include the genetic diagnosis and treatment of patients with mitochondrial cytopathies, inborn errors of metabolism, cognitive and developmental regression, autism, leukodystrophies and developmental delays. He is part of the North American Mitochondrial Disease Research Consortium (NAMDC) and the Primary Investigator for the Pearson Syndrome Natural History study. He is an invited lecturer at national meetings and hospitals. He completed his residency in pediatrics and fellowship in child neurology at the Children's Hospital of Pittsburgh and received additional training in genetics and metabolism at Cleveland Clinic and Centers for Inherited Diseases of Metabolism. Dr. Parikh has had the privilege of having Bruce Cohen, Charles Hoppel and Marvin Natowicz serve as his teachers during that time. He joined the Cleveland Clinic in 2004. Since 2007, Dr. Parikh has been selected as one of "America's Best Doctors." He serves as Scientific & Medical Advisor to the United Mitochondrial Disease Foundation, Cyclic Vomiting Syndrome Association and the International Foundation for CDKL5 Research. He is the Past President of the Mitochondrial Medicine Society. He is an invited faculty member of the North American Metabolic Academy. He was on the scientific planning committee of the Child Neurology Society and is an ad hoc reviewer for the Journal of Child Neurology, Journal of Inherited Metabolic Disease and Molecular Genetics & Metabolism.

What is the impact of illness or infection on a patient with mitochondrial disease? Patients, parents, and healthcare providers with firsthand experience of mitochondrial disease have probably experienced the consequences of an illness or infection. Illnesses and infections have a more dramatic and prolonged impact on children and adults who suffer from mitochondrial disorders, often causing long periods of fatigue, regression in developmental milestones, skills or baseline function, and exacerbation or complaints of additional (unrelated) symptoms during and after the period of illness. In addition, some physicians and families notice an increased susceptibility to illness for patients with mitochondrial disease. However, there is limited published data on systematic analysis of immune system in patients with mitochondrial disease. Research focusing on the relationship between immune function and the mitochondria has been mostly limited to cell-based studies. Join us to listen, learn and discuss the recent research and publication from an interdisciplinary collaboration between clinical investigators, Dr. Melissa Walker (Neurology), Katherine Sims (Metabolic Diseases) and Jolan Walter (Pediatric Immunology) at Massachusetts General Hospital, Boston, MA. These clinicians sought to determine how often infection and illness (including a systemic inflammatory response) occurred in patients with well-defined mitochondrial disease and immunodeficiency. A subset of their mitochondrial patients with evidence of immune abnormaliites repsponded well to immunoglobulin replacement therapy with less infections, preserved developmental milestones and improved quality of life. About the Speaker Dr. Katherine Sims is a Pediatric Neurologist at the Massachusetts General Hospital. Her clinical work over the last 30 years has focused on the broad scope of neurogenetic disorders including those of the lysosome, particularly neuronal ceroid lipofuscinosis [Batten disease, NCL disorders], Fabry disease, Norrie disease, general neurometabolic disorders and, most recently, the primary mitochondrial energy metabolism disorders Over the last 15 years, Dr. Sims, working as clinician scientist, has directed the design and development of Patient Registries and BioRepositories for Mitochondrial, NCL and Norrie diseases. She is an expert diagnostician and works with great facility in identifying clinical cases and facilitating entry into appropriate clinical translational studies. Jolan E. Walter, MD, PhD is the Director of Pediatric Immunodeficiency Program at Massachusetts General Hospital for Children. Dr. Walter’s clinical care focuses on patients with immune deficiency. She jointly follows patients with mitochondrial disease and immune dysfunction with the Neurogenetics Program (Dr Kathy Sims, Dr Amel Karaa and Dr Melissa Walker). She also conducts translational research on autoimmune manifestation of primary immunodeficiencies. Dr. Walter has graduated with a MD and PhD from University of Pecs, Hungary. Dr. Walter is has trained in Pediatrics at Children’s Hospital of the King’s Daughters, Eastern Virginia Medical School and in Allergy/Immunology at Boston Children’s Hospital. During her training, she conducted research both in the field of Virology and Immunology. Melissa A. Walker, MD, PhD is a fourth year trainee in the Massachusetts General Hospital Child Neurology Residency ProgramDr. Walker’s clinical and scientific interests focus on improving the understanding and treatment of primary mitochondrial disorders. Dr. Walker received her MD and PhD degrees from Columbia University College of Physicians and Surgeons in New York City, New York. She train

Understanding the mechanisms of mitochondrial deafness Join us this month with Dr. Peter Kullar, Clinical Research Fellow at the Wellcome Trust Research Centre for Mitochondrial Disease at Newcastle University (UK) to learn about mitochondrial disease and hearing loss. Key topics include: Mechanisms of hearing and hearing loss Clinical profile, workup and diagnosis of a new patient Treatments and new directions for therapies Research studies for patients with mitochondrial disease related hearing loss Dr. Kullar and Dr. Chinnery have a specific interest in the A1555G mutation (antibiotic associated deafness) and in causes of mitochondrial disease related deafness. Learn more at http://www.newcastle-mitochondria.com/research-projects/understanding-mechanisms-mitochondrial-deafness/ About the Speaker Dr. Peter Kullar is a clinical research fellow at Newcastle University's Wellcome Centre for Mitochondrial Disease Research.

This topic is dramatically important to the parents of children with complex gastrointestinal presentations of mitochondrial disease. MitoAction brings this topic to our Mito community today in response to the increasing number of accusations of child abuse and Munchausen by proxy that have been placed upon many parents of children struggling from the devastating symptoms of mitochondrial disease. Join us this month as we celebrate "International Mitochondrial Disease Awareness Week" across the globe and join efforts to improve awareness, acceptance and understanding of mitochondrial disease and the impact that the condition has on children and adults. Dr. Flores will discuss "Munchausen by proxy and the intestinal failure patient" and take a candid look at cases where children with mitochondrial disease and intestinal failure caused the family's ability to care for the child to be called into question. Dr. Flores will address the challenges that face both physicians and parents when caring for these patients. About the Speaker Dr. Alex Flores serves on the MitoAction Medical Advisory Board and iis Chief of Pediatric Gastroenterology and Nutrition, Floating Hospital for Children at Tufts Medical Center, and an Associate Professor at Tufts University School of Medicine. He is a graduate of the Universidad de San Carlos de Guatemala School of Medical Sciences, and received graduate training at Baylor College of Medicine, Children's Hospital Boston/Harvard Medical School, Duke University Medical Center, Hospital Militar, Jacaltenango Hospital, Roosevelt Hospital in Guatemala, and the World Health Organization-UNICEF. Dr. Flores is board certified in Pediatric Gastroenterology and Pediatrics and works closely with Dr. Mark Korson to support metabolic and mitochondrial patients with GI dysfunction. In addition to developing the LAPEG procedure, Dr. Flores' specialties include GI motility disorders, and general pediatric gastroenterology.

Talking points include: What is the immune system and why is it important? Infection and mitochondrial disease Immune function in mitochondrial disease About The Speaker: Dr. Peter McGuire Dr. Peter McGuire received his MBBCh (with Honours) from the Royal College of Surgeons in Ireland in 2003. Following a combined residency in Pediatrics and Medical Genetics at Mount Sinai Medical Center in New York City, he remained as an Assistant Professor in the Program for Inherited Metabolic Diseases at Mount Sinai. Dr. McGuire is board certified in Pediatrics, Clinical Genetics and Biochemical Genetics. In 2010, Dr. McGuire moved to the National Human Genome Research Institute (NHGRI) at the National Institutes of Health to join the Physician Scientist Development Program. He was appointed to the position of tenure track Investigator in 2016. Throughout his career, Dr. McGuire has been focused on improving the care of patients with disorders of mitochondrial metabolism. By combining his training in Immunology and Biochemical Genetics, he has fashioned a translational research program to understand the interplay between mitochondrial metabolism and the immune system. As Head of the Metabolism, Infection and Immunity Section (MINIS) at NHGRI, Dr. McGuire and his team study the interplay between metabolism and the immune system in patients with inborn errors of mitochondrial metabolism. The group focuses on two aspects of immunometabolism: 1) Immune system activation and end-organ mitochondrial metabolism The focus of the group's research on immune system activation and end-organ metabolism is based on the clinical observation that infection is a major cause of morbidity and mortality in patients with mitochondrial disease. The MINIS uses animal models, combined with infectious organisms, to yield insights into the metabolic perturbations seen in disorders of mitochondrial metabolism during infection and to identify potential targets for intervention. 2) Role of mitochondria in immune cell function The group also studies mitochondrial metabolism and immune cell function. Immune cells drastically alter their metabolic programming during activation and differentiation. The deficiencies present in patients with mitochondrial disease may affect these processes. The group developed a clinical protocol in the National Institutes of Health (NIH) Clinical Center, called the NIH MINI Study: Metabolism, Infection and Immunity in Inborn Errors of Metabolism (NIH Clinica

Join MitoAction and Dr. Richard Frye to discuss the distinction between primary and secondary mitochondrial diagnosis. Some talking points will include: Primary mitochondrial disease (PMD) is ideally diagnosed by a known or indisputably pathogenic mitochondrial or nuclear DNA mutation. Secondary mitochondrial dysfunction (SMD) can be caused by genes encoding either function nor production of the oxphos proteins and accompanies many heriditary non-mitochondrial diseases. Secondary mitochondrial dysfunction (SMD) can also be caused by enviornmental factors. In the absence of the ability to diagnose a primary mitochondrial disease (PMD), mitochondrial dysfunction can be effectively treated with standard treatments for PMD. When the etiology of mitochondrial dysfunction is unknown, re-evaluation for genetic and other causes should be revisited on a regular basis. About The Speaker: Dr. Richard Frye is a pediatric neurologist and Chief of the Division of Neurodevelopmental Disorders at Phoenix Children's Hospital. He received his MD/PhD from Georgetown University in 1998. He completed a residency in Pediatrics at the University of Miami, Residency in Child Neurology and Fellowship in Behavioral Neurology and Learning Disabilities at Harvard University/Children’s Hospital Boston and Fellowship in Psychology at Boston University. He holds board certifications in Pediatrics, and in Neurology with Special Competence in Child Neurology. Dr. Frye is a national leader in autism research. He has authored over 100 peer-reviewed publications and book chapters, and serves on several editorial boards of scientific and medical journals.

Dr. Andrew Nierenberg from Massachusetts General Hospital to learn more about Psychiatric Disorders in Mitochondrial Diseases and Mitochondrial Dysregulation in Psychiatric Disorders. Andrew Nierenberg MD is the Director of the Bipolar Clinic and Research Program, Massachusetts General Hospital Professor of Psychiatry at Harvard Medical School. Emerging research suggests that there is a relationship from many psychiatric conditions and mitochondrial dysfunction. Join us to further examine: 1. The role of mitochondria in brain function; 2. Psychiatric manifestations of mitochondrial diseases; and 3. Mitochondrial dyregulations in psychiatric disorders.

A rare and life-limiting mitochondrial disease affects just three people in Ireland.  Two of them are Liz Dickson's children.  Lis spoke to Ciar about her children Tommy and Grace. Listen and subscribe to Newstalk Breakfast on Apple Podcasts or Spotify.     Download, listen and subscribe on the Newstalk App.    You can also listen to Newstalk live on newstalk.com or on Alexa, by adding the Newstalk skill and asking: 'Alexa, play Newstalk'.

Megan and Ashley have a great talk with April, who was diagnosed as an adult with a mitochondrial disease. She is a true Mito warrior and is currently writing her memoir. Find out more: https://www.facebook.com/chronicallyapril and https://aarguin.wixsite.com/website This is a podcast for families and friends of children and adults with Mitochondrial Disease and other rare diseases. Two moms of Mito kids sharing support and resources and building community. Also available on Apple, Google, Spotify and YouTube. http://mitopodcast.com

Thank you for joining us for our 2nd Cabral HouseCall of the weekend! I'm looking forward to sharing with you some of our community's questions that have come in over the past few weeks… Bryan: Hi Dr Cabral. Just want to start by thanking you for everything you do for me and so many people. You (and Julia) have helped me uncover a couple of root causes to some of my dis-eases and I'm feeling much better overall. I travel quite a bit for work, sometimes have to stay in hotels, and just find myself in situations where I can't really cook and it might take a lot of effort to find something healthy. I always take my DNS powder and shaker bottle with me everywhere for the morning and sometimes afternoon shake. Do you have any recommendations for eating clean lunches and dinners while on the road or somewhere where it's difficult to cook? Thank you so much.   Anonymous: Dr. Cabral, I recently ran the heavy metals and minerals test and it was recommended that I start on a multi vitamin for some subtle mineral deficiencies. I am using the equilife multi and have noticed my urine taking on a neon yellow color. I am well hydrated, and my urine very rarely goes past a very pale yellow, mostly clear. Is this a sign that there are vitamins that are not being absorbed or possibly that I am getting too much of certain vitamins and simply offloading the excess? Thanks for all you do!   Lesley: Hi Last year I was admitted to hospital with Covid pneumonitis and had oxygen for 12 days. I was hypoxic on admission but not noticeably breathless(silent hypoxia). I have been on a good nutrition plan since hospital discharge and taking zinc, vit c and vit d. I have just had a 12 week follow up X-ray which shows resolving Covid pneumonitis. I feel quite well but worried about the recovery of my lungs. My blood saturation is good 99%. Please can you give me any advice on what I can do to improve my lung recovery. Many thanks   Diana: Hi Dr. Cabral, thank you for everything you do and your daily podcasts! I have a question about digestive enzymes. Is there such a thing as being allergic to digestive enzymes? My son has Alopecia Areata, never had any stomach issues like bloating and vomiting, but he does when he takes digestive enzymes, he has tried 3 different and they all had the following enzymes in comment: Protease, amylase, lipase. Any idea of what could be the reason for bloating and vomiting after taking digestive enzymes? It also triggered a flareup. I want to do the CBO protocol, but I am afraid of him losing more hair because of the biofilm distributor and die off symptoms. He is 15 years old and it's been very hard.   Michelle: I have a family member who was just diagnosed with mitochondrial disease? Can you recommend an ayurvedic/ functional medicine approach?Labs or tests that she should have run? Any insights would be appreciated--love your podcast!   Lorena: We all know how estrogen dominance and weight gain in the mid section are related. But this is interesting because there have been studies (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5460681/) that show how the risk of diabetes was reduced by 62% in women currently using HRT (hormone replacement therapy with estradiol included) compared to women who had never had HRT. One resource suggested that loss of estradiol, the primary human estrogen, from either natural or surgical menopause causes an abrupt reduction in metabolic rate, a tendency to increased fat around the middle, increased problems with cholesterol and triglycerides, and increased progression to metabolic syndrome. So which one is it? Does it cause weight gain or not? I'm confused now and I only trust your advice haha… Thank you for tuning into this weekend's Cabral HouseCalls and be sure to check back tomorrow for our Mindset & Motivation Monday show to get your week started off right! - - - Show Notes & Resources:  http://StephenCabral.com/2263 - - - Dr. Cabral's New Book, The Rain Barrel Effect https://amzn.to/2H0W7Ge - - - Join the Community & Get Your Questions Answered: http://CabralSupportGroup.com - - -  Dr. Cabral's Most Popular At-Home Lab Tests: > Complete Minerals & Metals Test (Test for mineral imbalances & heavy metal toxicity) - - - > Complete Candida, Metabolic & Vitamins Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Complete Stress, Mood & Metabolism Test (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Complete Stress, Sleep & Hormones Test (Run your adrenal & hormone levels) - - - > Complete Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Complete Omega-3 & Inflammation Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels)

MITO Meeting: MONTHLY INTERNATIONAL TELECONFERENCE OUTREACH Join us with Dr. Katherine Sims from Massachusetts General Hospital as we take a closer look at understanding genetic inheritance patterns of mitochondrial disease.

Exclusive Interview with Dr. Guy Miller, CEO of Edison Pharma. Is there hope for a cure for Mitochondrial Disease? Perhaps the answer is closer than we thought. On July 15, 2008 Edison Pharma and partner Penwest Pharmaceuticals announced that A0001, an “improved” variant of Coenzyme Q10 (CoQ10), has entered Phase 1 clinical development with healthy volunteers. Edison predicts trials in patients with inherited mitochondrial disease will begin in 2009.

Webinar Link: Becoming the Heart Centered CEO“Ultimately, if the audience can take one thing away from this conversation, I would love for them to just get that. If they have one good idea and passion that they want to follow, they should absolutely go for it because it's possible. It's more than possible. It's like really,  honestly the best thing that you could do.”Welcome to Episode #20 of The Out of Your Mind Podcast. Thank you for taking time out of your busy schedule to show up for yourself and tune in. In this week's episode, I sat down to chat with Special Needs Attorney, and advocate Annette Hines. As a special needs parent herself, Annette has dedicated her life after the loss of her daughter to helping other families navigate the legal and social world with more ease and clarity. The owner of multiple businesses all focused on helping those with special needs and their families, Annette has such an amazing and beautiful story to share. Annette Hines has been practicing in the areas of Special Needs, Elder Law and Estate Planning for over twenty years.  Ms. Hines brings personal experience with special needs to her practice, as the mother of two daughters, one of whom passed away from Mitochondrial Disease in November 2013. This deep personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to the practice.What inspired you this episode? I'd love to hear from you. Take a screenshot, tag @yoginipam &  @parentingimpossbile  on Instagram, and share something that resonated with you from this week's episode with Annette Hines.Here's a quick glance at this episode…[00:07:55] The key to being an entrepreneur according to Annette. [00:10:50] How struggles and love, inspired a major shift in her world, and how that grew into the businesses she runs today. [00:16:10] The pain and love that became a book, and the healing that offered. [00:35:05] The importance of having guidance and support in your life as a human and a business owner. [00:43:05] Learning to embrace the possibilities and follow your passion is a must. Rate, Review, & Follow on Apple podcasts at https://pamgodbois.com/ApplePodcast Leaving a review helps me to continue to create more content for entrepreneurs, just like you, looking to level up their life and business by stepping into alignment. Click here, scroll to the bottom, and tap “Write a Review” to get started.Links: Guest Website: http://specialneedscompanies.com/Let's connect on Instagram, Facebook & Tiktok. Thank you so much for listening to this week's episode. Be sure to tune in next week.If you are loving these episodes, please consider donating to support the show. https://www.paypal.com/donate/?hosted_button_id=3ST6F3UZ86P6U

Ashley and Megan talk to Sebastien of the Flowering Hope Foundation. His son, Jagger, has Leigh Syndrome, a mitochondrial disease. Sebastien shares his story, and his work in promoting information and research on the use of medical cannabis, which has been instrumental in reducing the number of daily seizures that Jagger suffers. This is a podcast for families and friends of children and adults with Mitochondrial Disease and other rare diseases. Two moms of Mito kids sharing support and resources and building community. Also available on Apple, Google, Spotify and YouTube. http://mitopodcast.com

When mitochondria cannot convert food and oxygen into life-sustaining energy, cell injury and even cell death follow. When this process is repeated throughout the body, organ systems begin to fail and even stop functioning.In this episode, Dr. Jeff Armstrong interviews Dr. Philip Yeske, Science & Alliance Officer at the United Mitochondrial Disease Foundation.  We discuss mitochondrial disease and health and why mitochondria are so important for aging well.If you would like to learn more about mitochondrial disease, the United Mitochondrial Disease Foundation, and how you can help support research and care in this area, please, visit the UMDF at:https://www.umdf.org/https://twitter.com/umdfscienceTo donate:https://www.classy.org/give/153589/#!/donation/checkoutIf you have questions you want answered and topics you want discussed on "Aging Well,"  send us an email at agingwell.podcast@gmail.com.

Megan and Ashley talk to Rachel from Cecily's Closet. This is an amazing organization that collects and donates equipment and supplies to families of special needs children. It is named in honor of Rachel's daughter Cecily. Find out more at https://www.cecilyscloset.org/ This is a podcast for families and friends of children and adults with Mitochondrial Disease and other rare diseases. Two moms of Mito kids sharing support and resources and building community. Also available on Apple, Google, Spotify and YouTube. http://mitopodcast.com

In the last episode of Annette Hines's three-part series of Telling Her Story, Annette talks about the relationships in her life. Learn all about Annette's life story from finishing college to the present. It is all about the relationships and how they have carried her through the turmoil and challenges of her life. If you'd like to learn even more about Annette, check out her personal memoir, Butterflies and Second Chances: A Mom's Memoir of Love and Loss available in paperback. Married to her first husband right out of law school, followed by a pregnancy there after, life became difficult very quickly. Elizabeth was born prematurely with medical complications, that lead to a diagnoses of Mitochondrial Disease. Annette and her husband made a move from Virginia to Massachusetts to access better medical care and be near Annette's family for support. Next came their second child, Caroline, who was, as doctors said “perfect.”  Caroline's entrance into the family brought about a trying sibling relationship as well as another child to nurture alongside of Elizabeth's constant healthcare needs. The husband was not coping well with all the responsibilities of family life and Annette was having to care for him too. A mentally and physically exhausted caregiver, Annette decided it was best to end the marriage and became a single parent.    It was time to go back to a professional work life to support the girls. Annette's mom moved in to assist as a caregiver and provide support for her daughter. This was a time of adjustment as their family was not like other traditional families. Not really thinking she would ever find a life partner again; Annette is surprised when she meets Mark at a work event. They immediately connect through similar and shared marriage and family experiences. After dating for a period, they wed in a small and intimate church ceremony a few weeks before Elizabeth's unfortunate passing. Their relationship is crucial in getting Annette through the mourning and grief over the loss of Elizabeth. Mark provides Annette with unwavering support throughout this challenging time. Annette believes that although they are “flawed” individuals they are extraordinarily strong together. People see Mark as a best supporting husband. Annette believes he is her co-star! So please join Annette and hear her story in detail on this Parenting Impossible episode of Telling Her Story, Part 3. If you would like to learn even more about Annette Hines please check out her book, , Butterflies and Second Chances: A Mom's Memoir of Love and Loss.

Have you registered or donated to the 2022 Mito 5K?! This is the 10th year for this amazing event has raised over $800,000 for mitochondrial disease research! Ashley and Megan give a quick update on this great family event that they help organize and put on each year. Find out more at https://p2p.onecause.com/mito5k This is a podcast for families and friends of children and adults with Mitochondrial Disease and other rare diseases. Two moms of Mito kids sharing support and resources and building community. Also available on Apple, Google, Spotify and YouTube. http://mitopodcast.com

In this episode the Marias talk to Melissa about her special needs story and experiences.Mama Marias is a podcast for parents and caregivers of children with special needs of any kind. It is called Mama Marias because the two hosts are both named Maria and each has a teenage daughter with special needs. It is their hope to share their experiences and knowledge, which they have gained through both tough and good times over the years. They hope to be a resource and support for families. They want parents to know they are not alone...not alone in the way they are feeling, in the things they are experiencing, and in the things they are dreaming. Mama Marias aims to bring families understanding, peace, and continued hope. Please email the hosts at mamamariaspodcast@ascfamily.org with any suggestions or questions. We look forward to hearing from you. Thank you for being a part of our lives because we would like to be a part of yours.

Let's get back outdoors, go exploring, and improving our sustainability for the environment. These are bolder-sized topics to tackle, and especially for those of us in the chronic illness/disability community, the concepts of adventuring outdoors or being an environmentalist can be complicated by our health struggles. But the truest fact is that exploring outdoors and being part of supporting the environment are experiences everyone with a chronic illness or disability should be able to have in life. Our guest, Kelcie Miller-Anderson, is a Canadian environmental scientist and disability outdoor adventuring specialist. Her complex chronic illnesses like Mitochondrial Disease, EDS and Mast Cell Activation Syndrome affect every aspect of her life, but her passion for science has maintained as she's adapted with innovation. She's founded two companies, MycoRemedy and Bumblechain, both aiding different aspects of the environment, and runs the popular Instagram account, The Chronic Explorer, showcasing how her treks outdoors with awesome mobility aids.Check out these five fun segments:At 4:00, we've got Five Second Challenge as Kelcie rapidly let's off fun facts about herself, like her favorite science word to use, why Canada is truly a tourist's dream, and why Kelcie might have a love-hate relationship with winter.At 10:05, get chatting about all things science, sustainability and innovation…but make it disability and chronic illness-friendly. Kelcie dives into her multi-year long career as an environmental scientist, explaining how her brother impacted her love of science, what are the intersections of sustainability and disability we can tap into so helping the environment can be accessible, and the innovative ways we can all get more knowledgeable on helping the planet.STORY TIME at 31:05 takes us on an epic story of humor and realness of a time Kelcie was a young leader in London dealing with hectic travel and a unique introduction with Sir Richard Branson and her wheelchair. Second half takes us on an adventure at 36:48 when Kelcie and Dominique give all the needed facts and advice to make nature and adventuring accessible and friendly no matter your experience level, and how to make outdoor activists affordable and fun with mobility aids. And hang in for our final segment at 52:15, building a playlist for adding spice of innovation, outdoor activities and sustainability into your life. With the best accessible travel apps, great outdoor adventuring hashtags, and documentaries/books to check out, Kelcie also digs into the multifaceted power of the IG Geo-Tag and you WILL BLOW YOUR MIND getting this tip! Let's get outdoors accessible and safely with some fun to lead into 2022! Please like, comment, subscribe and share this episode, follow Kelcie @thechronic_explorer. Please check out the InvisiYouth Charity Shop to buy yourself or someone you care about our limited edition Subtle Activist Color Block bracelet on www.etsy.com/shop/invisiyouthcharity with free shipping globally, and please support InvisiYouth Charity by donating, following and joining our programs and community @invisiyouth!

Janice, an incredibly strong mito mother, recently lost her beautiful daughter, Juliet.  In this episode of When Autumn Comes, Janice opens her heart and shares raw and honest feelings about her journey as a special needs parent. Moments you do not want to miss: Mitochondrial Disease affects this family The roller coaster that is parenting a child with a chronic, life threatening disease Finding gifts in unexpected places What to say (or not say) to a grieving mother Links and resources: Juliet's Website: http://www.julietchristina.com Follow us on Facebook: www.facebook.com/WhenAutumnComesPodcast Follow us on Instagram: @WhenAutumnComesPodcast Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories of medical and special needs parenting from families like yours. And, if you enjoyed this episode, please leave us a 5 star rating and a review!  Thank You!  

Natalie Yivgi-Ohana, PhD, started a postdoc in Canada, yet decided to come back after just two and a half months, realizing it is not working for her and her family. For some, this could be the end of their scientific careers, but not for Natalie. After a short postdoc at Weizmann Institute, Natalie thought of an ingenious idea that changed her life and has the potential to save many children around the world. In this episode she shares her story, the story of Minovia. EPISODE IS IN ENGLISH Episode music: "Dream Catcher", Kevin MacLeod (incompetech.com). Licensed under Creative Commons: By Attribution 3.0. creativecommons.org/licenses/by/3.0/ --- Send in a voice message: https://anchor.fm/macademia/message

Join MitoAction and Matthew Klein and Francesco Bibbiani from PTC Therapeutics for our November Mito Expert Series presentation. About the Speakers Matthew B. Klein, MD, MS, FACS is Chief Development Officer at PTC Therapeutics, Inc. Prior to joining PTC, Dr. Klein was CEO and Chief Medical Officer of BioElectron Technology Corporation, a biotechnology company focused on development of redox active small molecules for mitochondrial disease and related disorders of oxidative stress. Prior to joining BioElectron, Dr. Klein was the Auth-Washington Research Foundation Chair of Restorative Burn Surgery at the University of Washington. Dr. Klein completed his undergraduate degree at the University of Pennsylvania where he graduated summa cum laude and Phi Beta Kappa, and received his MD degree with honors from Yale University. Francesco Bibbiani is a board-certified neurologist with over 20 year experience in clinical development between the pharmaceutical industry and the Experimental Therapeutic Branch (ETB) of the National Institute of Health (NIH), where we conducted proof of concept trials in several neurological indications. In his past positions, Francesco conducted various clinical trials in Alzheimer disease, epilepsy and liver disease, all studies that led to multiple regulatory submissions and approvals with the FDA, EMA and other global regulatory agencies. Currently, he is the Vice President of Clinical Development at PTC Therapeutics, where he is the clinical lead of the DMD and mitochondrial epilepsy projects. Francesco received his MD degree with honors from the University of Pisa, Italy where he also completed his residency program in Neurology, with honors.