Podcasts about charcot marie tooth

Episode Description:In this inspiring episode of the TRX Podcast, host Nathan D'Rozario sits down with Tara Lyn Emerson—fitness coach, TRX Trainer, and ELDOA specialist—to explore her journey from growing up with a tennis coach as a father to becoming a standout figure in the fitness industry.Tara shares how she's built a successful personal training business, her approach to coaching both in group settings and one-on-one, and the powerful mindset she developed after being diagnosed with Charcot-Marie-Tooth disease at just 13. You'll hear how she integrates TRX and ELDOA into her movement philosophy, and why passion, adaptability, and empathy are at the core of her coaching style.Whether you're a fitness pro, a coach, or someone looking to find purpose through movement, this episode offers practical insights and motivation to level up your practice.Thank you to our sponsors:– Hyperice: Recovery technology designed to help you move better and feel your best.– Myzone: Heart rate tracking that keeps you motivated and connected.– Lyfelinez: High-quality, smart fitness equipment for professionals and enthusiasts.– Wattbike: The gold standard in indoor performance cycling.

Have a comment or question? Click this sentence to send us a message, and we might answer it in a future episode.Welcome to Season 5, Episode 16 of Winning Isn't Easy. In this episode, we'll dive into the complicated topic of "Navigating Claims With Charcot-Marie-Tooth Disease (CMT)."Join attorney Nancy L. Cavey, a leading expert in disability claims, for an eye-opening discussion on a frequently misunderstood condition with major implications for long-term disability benefits: Charcot-Marie-Tooth disease, or CMT. If you haven't heard of CMT, you're not alone. Though it's one of the most common inherited neurological disorders, it's often overlooked - especially in disability evaluations. That oversight can cost you the benefits you need. In today's episode, we'll break down what CMT is, how it progresses, and why it can be more disabling than people - including insurance companies - realize. From muscle weakness and balance issues to pain and fatigue, we'll explore how to document your condition effectively and meet insurer expectations. You'll learn how CMT interacts with disability policy standards, what evidence to submit, and how to avoid the most common claim mistakes. Whether you're applying, appealing, or just exploring your options, this episode is packed with strategies to protect your financial future. Let's get into it.In this episode, we'll cover the following topics:One - Understanding Charcot-Marie-Tooth DiseaseTwo - Challenges in Proving Disability with Charcot-Marie-Tooth DiseaseThree - Best Practices for Long-Term Disability Claims Involving Charcot-Marie-Tooth DiseaseWhether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.Listen to Our Sister Podcast:We have a sister podcast - Winning Isn't Easy: Navigating Your Social Security Disability Claim. Give it a listen: https://wiessdpodcast.buzzsprout.com/Resources Mentioned in This Episode:LINK TO ROBBED OF YOUR PEACE OF MIND: https://mailchi.mp/caveylaw/ltd-robbed-of-your-piece-of-mindLINK TO THE DISABILITY INSURANCE CLAIM SURVIVAL GUIDE FOR PROFESSIONALS: https://mailchi.mp/caveylaw/professionals-guide-to-ltd-benefitsFREE CONSULT LINK: https://caveylaw.com/contact-us/Need Help Today?:Need help with your Long-Term Disability or ERISA claim? Have questions? Please feel welcome to reach out to use for a FREE consultation. Just mention you listened to our podcast.Review, like, and give us a thumbs up wherever you are listening to Winning Isn't Easy. We love to see your feedback about our podcast, and it helps us grow and improve.Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals. 

In today's episode, we're diving into the world of red light therapy with Dr. Carl Rothschild, a pioneer in the field and the founder of Trifecta Light™ Technologies. Dr. Rothschild shares his incredible journey from starting in chiropractic care to discovering the transformative power of red light therapy. While the potential of red light therapy is exciting, there are still many aspects that are being researched. In this episode, we explore both the science and the promises behind this therapy, as Dr. Rothschild discusses how it works, its benefits, and how it's revolutionizing the wellness industry.We discuss:How red light therapy works on a cellular level and its powerful impact on mitochondria.The science-backed benefits for skin health, recovery, fat loss, and more.What to look for when shopping for quality red light therapy products.How red light therapy is changing lives—from professional athletes to those with chronic conditions like Hashimoto's and Parkinson's disease.Whether you're new to red light therapy or have been using it for a while, this episode will provide valuable insights into how to harness its full potential for healing, recovery, and overall wellness.Guest InfoDr. Carl Rothschild is the founder and owner of Trifecta Light™ Technologies, a leading innovator in LED Infrared/Red Light therapeutic technology. With over 40 years of experience in the health and wellness industry, Dr. Rothschild has become a recognized expert in the field, helping individuals across the world achieve optimal health with cutting-edge red light therapy.For more information on red light therapy or to get your hands on Dr. Rothschild's book, Illuminated Healing, visit ⁠Trifecta Light™⁠ or find the book on Amazon.Notes from Coach DianaWhile Dr. Rothschild's insights into red light therapy are incredibly valuable, I want to take a moment to clarify a few points that are still being studied in the scientific community:Fat Loss Mechanism: Dr. Rothschild shared an exciting concept about red light therapy making fat cell walls more porous, allowing fat to leak out. While there is research suggesting that RLT can support fat loss by stimulating fat cells and enhancing circulation, the exact mechanism—such as whether red light therapy directly makes fat cells "porous"—is not yet fully understood or scientifically established as it is part of ongoing research. Red light therapy has shown promise in enhancing metabolic processes, but it's not a substitute for diet and exercise (as stated within the episode).Miracle Claims: Throughout the conversation, Dr. Rothschild used the term "miracle" to describe the effects of RLT. While many users report positive results, it's important to remember that "miraculous" outcomes should be taken with caution. Red light therapy is a growing field, and while the early results are promising, more research is needed to fully understand the scope of its effects.Curing Diseases: Dr. Rothschild highlighted how RLT has helped patients with conditions like ulcerative colitis and Charcot-Marie-Tooth disease. While there are indications that RLT can support healing and symptom management in chronic conditions, it's important to clarify that RLT should not be viewed as a cure for such conditions. It can be an adjunct therapy, but it's always best to consult with a healthcare provider for comprehensive treatment.

In this episode, Paul Pennington talks to Doctor Margaret O'Hara from Long COVID Support. Sue Farrington, CEO of SRUK, sheds light on Raynaud's phenomenon, explaining the symptoms, risk factors, and ways to manage this often misunderstood condition. Finally, Simon Bull, CEO of CMTUK, provides an overview of Charcot-Marie-Tooth disease (CMT), a rare neurological disorder, and talks about CMTUK's role in raising awareness, supporting research, and helping those living with this progressive disease. 

Charcot-Marie-Tooth (CMT) disease is a progressive inherited neurologic disorder causing muscle weakness and lower extremity deformity. The goal of foot and ankle surgical treatment is to create a stable, plantigrade foot, with the potential elimination of brace-wear for ambulation. The aim of this study was to report baseline CMT patient function and subsequent outcome improvement from surgical treatment, as determined by PROMIS physical function (PF), pain interference (PI), and mental health/depression (D) scores.   In conclusion, surgical treatment for CMT patients provides significant clinical improvement in all measured outcome domains. CMT patients can be restored to normal population physical function and pain interference outcome scores. Patients with more severe deformity have similar improvement from surgical treatment, although their ultimate functional improvement is blunted due to a lower baseline.   Click here to read the article.

Diving into his passion for health and fitness, Kyle Willmington launched a creative social media challenge, inspiring others to make healthier choices by testing the limits of his disability, Charcot Marie Tooth. With a focus on the power of mindset, Kyle discusses how he navigates obstacles and the vital support he receives from family and friends. As the episode draws to a close, Kyle reveals his exciting vision for a community centered on wellness and education for individuals with disabilities. Want to support Kyle's cause? Check out the links below:  Instagram: https://www.instagram.com/kylewillmington/ Website: https://www.kylewill.tv/ Watch the Full Episode with Captions Here: https://youtu.be/A5yazSztF_s Grab our first merch release at our website From Your Pocket https://fromyourpocket.com.au/work/listenable/merch Recorded, edited and produced by Angus' Podcast Company: www.sessioninprogress.com.au  See omnystudio.com/listener for privacy information.

Are you craving honest conversations and not just talking heads from the major media companies? According to Vox Topica, podcasting is now the leading trusted media source! We look at this headline and share more exciting podcasting news. Today, we explore Rode's new Rodecaster video device, discuss BetterHelp's investment in podcast advertising, and highlight important upcoming Podcast events! We also chatted with Jonah Berger about living with Charcot-Marie-Tooth disease and the inspiring research that is happening to find a cure. Tune in to hear the juiciest news in the podcasting industry, and get ready to mark your calendars for exciting podcast events on physical and virtual stages. Episode Highlights: [2:44] Improv Class Update and Encouragement [6:52] Introduction to Jonah Berger and CMT Awareness [15:47] Jonah's Journey with CMT and Marc's Annual Fundraising Walk [19:55] Podcasting Events and Headlines [27:59] Trust in Podcasts and Sponsorships [42:29] Rodecaster Video Announcement [1:04:01] Improving your sound quality Links & Resources: The Podcasting Morning Chat:  www.podpage.com/pmc He Walks like a Cowboy: podcasts.apple.com/us/podcast/he-walks-like-a-cowboy/id1536575871 Rødecaster Video:  www.instagram.com/marcronick/reel/DAUETTjysHd/ Podnews:  www.Podnews.net Contribute to Marc Ronick's 4th Annual Lansing Michigan Walk For CMT: https://bit.ly/pmccmt⁠ Join The Empowered Podcasting Facebook Group: ⁠www.facebook.com/groups/empoweredpodcasting⁠ Who Sponsors Stuff:  www.whosponsorsstuff.com Find Podcast Sponsors:  www.findpodcastsponsors.com Earn More and Grow You Comunity with Howl:  www.planethowl.com Voters Trust Podcasts Above All Media:  podnews.net/press-release/registered-podcasts-voters-trust-above Podbox Memphis: https://secure.everyaction.com/8zVxmT1e-0ixFqhy6pWxoQ2 Afros & Audio: https://www.afrosandaudio.com/Remember to rate, follow, share, and review our podcast. Your support helps us grow  and continue to bring valuable content to our community. Join us LIVE every weekday morning at 7am ET (US) on ⁠Clubhouse⁠: ⁠ https://www.clubhouse.com/house/empowered-podcasting-e6nlrk0w Brought to you by ⁠iRonickMedia.com⁠ and ⁠NextGenPodcaster.com⁠ Please note that some links may be affiliate links, which support the hosts of the PMC. Thank you! --- Send in your mailbag question at: https://www.podpage.com/pmc/contact/ or marc@ironickmedia.com

Dr. Todd Oyen returns to discuss his personal experience living with CMT. As it happens, September is CMT awareness month so this is the perfect time to share this special conversation. Links: 1) Charcot Marie Tooth Association 2) Hereditary Neuropathy Foundation 3) Muscular Dystrophy Association 4) World Tang Soo Do Association 5) Oyen's North Alabama Tang Soo Do 6) Dr. Oyen's YouTube Channel

de, Jill Cabernel shares her journey living with Charcot-Marie-Tooth disease and kyphoscoliosis and how it shaped her work as a content creator. She discusses embracing her disability, navigating the intersection of disability and fashion, and offering advice to her younger self. Jill also touches on mental health, tackling societal norms, and her goals for the future of disability representation.

We'd love to hear your thoughts on the podcast. Take the survey at wbur.org/survey. Evan Gershkovich and others returned to the U.S. in a historic prisoner swap with Russia. But they face a long road to recovery, and Liz Cathcart, executive director for Hostage U.S., explains what it will take to reintegrate them. And, Dr. Adeline Goss is grappling with the best way to treat her mother's Alzheimer's disease. She explains how the disease is affecting her family. Then, Paralympic swimmer Jamal Hill has Charcot-Marie-Tooth disorder. But he didn't always know about his diagnosis, and he certainly didn't let it stop him from excelling at swimming — he took home a bronze medal at Tokyo, and is going for gold in the Paralympic Games in Paris.Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Bienvenue sur RARE à l'écoute, la chaîne de Podcast dédiée aux maladies rares. Pour ce cinquième épisode sur la maladie de Charcot-Marie-Tooth, nous recevons Mme Libany, patiente atteinte de la maladie de Charcot-Marie-Tooth et présidente de l'association de patients CMT France. Nous abordons aujourd'hui la survenue des premiers symptômes de la maladie, le diagnostic et la prise en charge des patients atteints de la maladie de Charcot-Marie-Tooth, les variations d'expression de la maladie entre les membres d'une même famille et les objectifs de l'association CMT France. Si vous désirez vous informer et aller plus loin dans la connaissance de cette pathologie, nous vous donnons rendez-vous sur notre site internet www.rarealecoute.com. L'orateur n'a reçu aucune rémunération pour la réalisation de cet épisode.   Invitée : Mme Libany – Présidente de l'association CMT France https://www.cmt-france.org/L-association-CMT-FRANCE  L'équipe : Virginie Druenne - Programmation Cyril Cassard - Animation Hervé Guillot - Production Crédits : Sonacom

Send us a Text Message.Already into Episode 3 of Season 2.We are pleased today to have our Guest Norman Hume, martin and Patrick have Known and worked with Norman for 30 years, Martin's childhood Dentists assistant was Norman's wife Anne.Norman has finally (after the second attempt) agreed to come onto the podcast and tell us about his very rare illness diagnosed as a young boy and the complaints he suffers with today.Norm has a rare illness called Charcot-Marie-Tooth DiseaseNorman also has some additional illnesses which include Bronchiectasis, Prostate Cancer and Heart failure.Martin and Patrick meet Norman at the local hostelry and have a very comfortable and informal chat where Norman speaks honestly and openly about his illness, the diagnosis and living with the diseases.Charcot-Marie-Tooth disease (CMT) is a group of inherited conditions that damage the peripheral nerves, which are located outside of the brain and spinal cord. It's also known as hereditary motor and sensory neuropathy (HMSN) or peroneal muscular atrophy (PMA). CMT is the most common inherited neurological disorder, affecting about one in 2,500 people.Bronchiectasis is a long-term condition where the airways of the lungs become widened, leading to a build-up of excess mucus that can make the lungs more vulnerable to infection.Prostate cancer is a disease that occurs when malignant cells form in the prostate gland, a walnut-sized organ that's part of the male reproductive system. It's the most common cancer in men in the UK, and some trans women and non-binary people (who were born male) can also develop it.Heart failure is a condition where your heart can't pump blood around your body as well as it should. It doesn't mean your heart has stopped working but you may need support to help it work better. Finally we do get a chance to slip in Martin's joke of the week. #Prostate Cancer#Bronchiectasis#CharcotmarietoothDisease#Emphysema#The after life#Ghosts#Spirts#Ouija boards#Mediums#Psychics#Reincarnation#HeartTransplant#EbsteinsAnomaly#RareCondition#HealthJourney#LifeChangingDiagnosis#MentalHealth#Vulnerability#SelfCompassion#PostTraumaticGrowth#MedicalMiracle#BBCSports#Inspiration#Cardiology#Surgery#Podcast#Healthcare#HeartHealth#MedicalBreakthrough#EmotionalJourney#SupportSystem#HealthcareHeroes#PatientStories#CardiologyCare#MedicalJourney#LifeLessons#MentalWellness#HealthAwareness#InspirationalTalk#LivingWithIllness#RareDiseaseAwareness#SharingIsCaring#MedicalSupport#BBCReporter#HeartDisease#PodcastInterview#HealthTalk#Empowerment#Wellbeing#HealthPodcast#ChronicIllness#mywishcharity#comedy#funny#joke#BBCuploads#Cancer#BreastCancer#Lungcancer#Childcancer#Bowlcancer#Canceruk#mywishcharity#MacmillancancersupportCheck out our new website at www.whostomanddick.comCheck out our new website at www.whostomanddick.com

Journal editors Prof. Philip Smith and Dr. Geraint Fuller discuss the August 2024 issue of Practical Neurology, with room for mystery, history and practical advice. In particular, they cover topics like whole genome sequencing, foot surgery for Charcot-Marie-Tooth disease, safe prescribing in steroids, and fertility treatment for the epileptic. There are also good reasons for dusting off the old optokinetic nystagmus drum, and a touching story of neuro palliative care. Read the Highlights - https://pn.bmj.com/content/24/4/261 - and the full issue - https://pn.bmj.com/content/24/4. Please subscribe to the Practical Neurology podcast on your favourite platform to get the latest podcast every month. If you enjoy our podcast, you can leave us a review or a comment on Apple Podcasts (https://apple.co/3vVPClm) or Spotify (https://spoti.fi/4baxjsQ). We'd love to hear your feedback on social media - @PracticalNeurol. The PN podcast is produced by Letícia Amorim and edited by Brian O'Toole. Thank you for listening.

Send us a Text Message.In this episode Duncan & Jim talk to Francois Lambrechts.We talk about Francois about his start to swimming in Queenstown in a borrowed wetsuit, but ended up swimming in skins in Dunedin. Impressive as the water can get below 10C in Dunedin.Francois has a rare disease call Charcot Marie Tooth syndrom which affects his electrical system, and in spite of this has become quite a swimmer.He is also an active volunteer for the NZ Coastguard and is participating in this years fund raising, the Big Swim. He tells us about the swim and also lots about what the coast guard does in New Zealand.The Big SwimFrancois page on the big swimThe Clever Dicks Big Swim pageInfo on Charcot-Marie-Tooth diseasehttps://rarediseases.info.nih.gov/diseases/1245/charcot-marie-tooth-disease-type-1a

Dr. Shannon Westin and her guest, Dr. Bryan Schneider discuss the article “ECOG-ACRIN EAZ171: Prospective Validation Trial of Germline Predictors of Taxane-induced Peripheral Neuropathy in Black Women with Early Stage Breast Cancer” recently published in the JCO and presented at the 2024 ASCO Annual Meeting. TRANSCRIPT  The guest on this podcast episode has no disclosures to declare. Shannon Westin: Hello, everyone, and welcome to another episode of JCO After Hours, the podcast where we get in depth on manuscripts published in the Journal of Clinical Oncology. I am your host, Shannon Westin, GYN Oncology Extraordinaire and also the Social Media Editor of the Journal of Clinical Oncology. And it is my great pleasure to present some really incredible work today that is going to be a dual publication in the Journal Clinical Oncology and a presentation at the American Society of Clinical Oncology Annual Meeting on Monday, June 3. And this is the “ECOG-ACRIN EAZ171: Prospective Validation Trial of Germline Predictors of Taxane-induced Peripheral Neuropathy in Black Women with Early Stage Breast Cancer.” And I am joined today by the senior author on the presentation and the primary author on the manuscript, Dr. Bryan Schneider. He is the Vera Bradley Professor of Oncology, the Professor of Medicine and Medical Molecular Genetics at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center in Indianapolis. Welcome, Dr. Schneider. Dr. Bryan Schneider: Dr. Westin, thank you for having me on today. Shannon Westin: We're so excited and we're really excited to really summarize this incredible work that's being presented today. So, first, let's just levelset. Can you speak a little bit about peripheral neuropathy and the most common causes in patients with cancer? Dr. Bryan Schneider: Yeah, I mean, I think for those of us who treat patients using the taxanes, we recognize probably one of the most important and common side effects that we deal with is peripheral neuropathy, and one that can, I think, impact both quality of life, but also impacts the ability to maintain dose intensity. When we think about risk factors for neuropathy, historically, I think obesity has been reported as a potential risk factor, as has diabetes and other conditions which put people at risk for neuropathy. Shannon Westin: And prior to your work that you'll discuss with us today, what do we know about the incidence of peripheral neuropathy in patients that identify as black? Dr. Bryan Schneider: Yeah. So, interestingly, I think we've recognized that patients who self identify as black have disparate outcomes in terms of inferior survival and more aggressive subtypes of breast cancer, like triple negative breast cancer. But I think the idea of toxicity being a disparate factor as well is probably a more recent one. Interestingly, as we set out to identify biomarkers to predict outcomes in the large adjuvant trial E5103, we weren't really setting out to look at this by race. We were using at that time, genome-wide approaches to identify biomarkers for toxicity and also efficacy. But what was interesting as we did that one of the most important predictors, as we looked across a number of important toxicities, was ancestry. And really the science spoke to us, it was very clear that patients of African ancestry had higher rates of bev-induced hypertension, anthracycline-induced cardiomyopathies and also peripheral neuropathy. Shannon Westin: That's so interesting. We have so much overlap in gynecologic oncology and breast cancer. And I don't know that I've ever seen work like this. And now it's making me very intrigued and making me want to move forward to that. Can you talk a little bit more about this ECOG-ACRIN E5103, like briefly about the study and what it demonstrated specifically? Dr. Bryan Schneider: Yeah. So E5103 was an adjuvant breast cancer trial that really set out to look at the impact of bevacizumab in the curative setting. This was a 5000 patient trial that randomized patients the standard backbone of chemotherapy. So everyone received four cycles of doxorubicin and cyclophosphamide, followed by weekly paclitaxel, and then with or without the addition of bevacizumab. So the parent clinical trial showed, as we know now, bevacizumab didn't add benefit, but certainly this was a fertile ground for us to use genomic markers to try to identify a number of other important factors and predictors. Shannon Westin: And what did you find genomically in that study that led to kind of where we are now? Dr. Bryan Schneider: Initially, what we found is that ancestry was a major predictor of neuropathy. And in that trial we saw essentially a doubling of the risk of grade 2 and above and a doubling of the risk of grade 3 and above neuropathy. When we then looked comprehensively across the genome for common variants that might put patients at risk for neuropathy, we had enough patients in the black population to identify some markers that seemed to differentially predict the risk of neuropathy in the patients of African ancestry. So there we found a variant in the gene FCAMR, which appeared to be protected from neuropathy, and FCAMR is known to have an immune modulatory effect. But importantly, we also found that rare variants, so we did this using an exome wide approach in a gene called SPF2, predicted an increased risk of neuropathy. Now, interestingly, that gene SPF2 is also thought to contribute to a hereditary form of neuropathy, Charcot-Marie-Tooth. Here, what we found, obviously, is that if you inherit two of these variants, you probably have a hereditary neuropathy, but if you inherit one, you may not have neuropathy at baseline, but if exposed to a neurotoxin, much more predisposed to that event. Shannon Westin: That is so intriguing and makes so much physiologic sense. So, can you talk a little bit about how that led to the development of the current study, the objectives design, that type of thing? Dr. Bryan Schneider: Yeah. I think, overarching question and concern is, and we see this with all clinical trials in the United States, is that we're seeing disparate outcomes in a population that are largely underrepresented in our clinical trials. And so one of the first things we wanted to do was really focus on the population that was being disparately affected. So EAZ171 was set out to accrue patients, and in fact, only accrue patients who were self described as a Bck race or African American. So the goal of this trial then was to see if, number one, we could further predict which patients were going to get neuropathy based on our germline genotyping, and then also to better personalize the type of taxane based, again on genomics, but also on the risk of dose reductions, risk of neuropathy, impact on financial toxicity, quality of life, and a number of other, what we felt to be, important clinical variables. Shannon Westin: So let's get into the details. What did you find regarding the incidence of neuropathy in the study, and how was it impacted by the type of chemotherapy the patient received? Dr. Bryan Schneider: Yeah. So the starting point, the primary objective of that study, was to try to validate a high and low risk composite score for neuropathy. And the trial was negative, meaning our genotypes did not predict significantly differences based on the germline genotyping. Now, interestingly, the genotyping did numerically separate, meaning those in the high risk category had about a 12% higher risk of neuropathy, but this did not meet statistical significance. Another major or key secondary endpoint, though, was to look at the type of taxane and its impact in this population. And indeed, what we found is that patients who received paclitaxel had a markedly and statistically significantly higher risk of both grade 2 and above and grade 3 and above peripheral neuropathy. And in addition, we saw more dose reductions, both because of TIPN and all causes in the paclitaxel arm. Shannon Westin: So why do you think you were unable to validate the genomic predictors in the current study? Dr. Bryan Schneider: This is an incredibly important question. So, number one, I mean, we were happy to see the directionality of our preliminary data be correct. But I do think that neuropathy is a very complicated toxicity, and it's probably a multigenic effect, and it probably is also impacted a lot by a variety of clinical factors. So some of the future work we'll be doing is looking at polygenic risk scores and other known genes that may be impactful, and also melding that with a number of really important clinical variables, because I still think we have the potential to predict this ahead of time. Shannon Westin: I know that this was such a patient driven topic, really focused on the patient experience and how to improve not only survival outcomes, but also toxicities and quality of life. Can you speak a little bit about the role of patients in the design of this trial, and maybe with helping it be as successful as it was with accrual? Dr. Bryan Schneider: Yeah. This has truly been one of the most exciting projects I've ever embarked on, and largely because of the incredible team atmosphere and contributions by so many people. Real thanks to the late Worta McCaskill-Stevens and also the late Edith Mitchell, who were two really fundamental disparities experts who really helped motor this trial to where it was. And also our patient advocates and the community at large really were part of the design and part of this from the very beginning, all the way through the publication, I think, have made it a clinically relevant study, and one that I think we're all very proud of. Shannon Westin: Is paclitaxel typically, what is the go-to? Or are more people using, let's say, docetaxel? Dr. Bryan Schneider: I think it depends a little bit on the disease setting and type. And again, is a function of historical clinical trials. One of the pivotal trials, E1199, actually compared a number of these. So it compared weekly paclitaxel to every three week paclitaxel to weekly docetaxel to every three week docetaxel in a two by two design. And essentially the conclusion there is that weekly paclitaxel and every three week docetaxel both outperformed what at the time was a standard of care, every three week paclitaxel. Now, weekly paclitaxel, at least through ECOG-ACRIN, has been adopted as kind of the standard reference therapy and schedule of choice, but largely because of the side effect profile. And again, this is based predominantly on white patients, where the tolerability is much better. Shannon Westin: Well, I mean, I think that this leads to really great information around how we're designing these trials and how we're potentially making those differences. What are your next steps here? Dr. Bryan Schneider: So I think one of the things this clinical trial did was first validate that we do see high rates of peripheral neuropathy in Black patients with breast cancer. This was a prospective study using both physician and patient adjudicated variables. So I think this is a really nice validation that this is a problem in this population. I think it also shows us that docetaxel is probably a more tolerable drug for black patients with breast cancer. The goal, though, I think in our future work, is really going to try to bring equity in terms of outcome and side effects. So we're working with ECOG-ACRIN now on our second trial, where really the primary endpoint is going to be to nullify the disparities and try to bring equity in terms of toxicity. One of the other pieces of work we're really excited about is we're doing some ex vivo work. So from patients in EAZ171, we have a blood stick where we're taking white blood cells and differentiating those into peripheral neurons. And here we're hoping to look at really important changes in both gene expression and epigenetics that might lead us to a little bit deeper understanding of the mechanism of the disparities in neuropathy, maybe what's causing some of the neuropathy. And we hope ultimately, these may lead to nice drug targets to help prevent or treat neuropathy down the road. Shannon Westin: Those are some really great ideas. The other thing that really caught my eye around your findings was what you all found regarding the physician reported and patient reported toxicity. I'd love for you to summarize that, because I think that's always a concern as well. Dr. Bryan Schneider: Historically, I think we recognize that physicians probably underreport side effects. And so we felt, and our team felt, that having patient reported outcomes would be a really critical piece to this study. What was fairly astonishing to me, if you look at the CTCAE, both patient and physician reported outcomes, they were actually pretty similar. And I think what this is a testament to is if physicians are actually thinking about the side effect, they do a pretty good job of predicting it. Now, one thing we're looking very forward to is that we have a long term follow up out to three years. So it'll be interesting to see if physicians continue to pay close attention to neuropathy, because I know the patients will be. So we'll be looking at the discordance at these longer term follow up time points as well. Shannon Westin: Well, great. This is such incredible work, and I'm like literally taking notes to get in touch with people I know that do this type of work and gynecological malignancies because I think that this is going to have far reaching consequences. So just thank you so much for taking the time to review this and congratulations on the JCO publication and ASCO presentation. It's very well deserved. Dr. Bryan Schneider: Thank you Dr. Westin. Shannon Westin: And thank you to all of our listeners. Again, we have been discussing the “ECOG-ACRIN EAZ171: Prospective Validation Trial of Germline Predictors of Taxane-induced Peripheral Neuropathy in Black Women with Early Stage Breast Cancer.” We're so grateful you joined us, and please do check out our other offerings wherever you get your podcasts. Have an awesome day. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Disclosures Research Funding Company name: Genentech/Roche Company name: Pfizer Company name: Foundation Medicine      

On this episode of The Association Podcast, we had the privilege of speaking with Morgan Roth, the Chief Marketing Officer of the Muscular Dystrophy Association. Morgan shares her fascinating career journey from broadcasting to the nonprofit sector, emphasizing her personal connection to MDA's mission as she lives with Charcot-Marie-Tooth disease. The discussion highlights significant milestones, such as recent FAA legislation improving air travel accessibility for people with disabilities, the organization's comprehensive roles in research, multidisciplinary care, and advocacy, and their community outreach activities. We also touch on the importance of digital fluency, actionable data, and proactive decision-making in nonprofit leadership. Morgan shares her pride in MDA's achievements and her commitment to supporting and advancing the neuromuscular disease community.

L'émission 28 Minutes du 07/03/2024 Hilarante et sans limites : on est tous accros à l'humour de Doully « J'ai toujours tourné en dérision toute la mouise qui m'arrivait. L'humour sauve. Il n'y a pas une seule raison valable de se prendre au sérieux. » Depuis son départ de chez ses parents à l'âge de quatorze ans, l'humoriste Doully a connu mille et une vies : go-go danseuse, barmaid, dame pipi, créatrice de prêt-à-porter, professeur de français… Avant de se lancer dans le stand-up en 2016 et de rencontrer Blanche Gardin, qui la sollicite pour faire ses premières parties. En 2018, son sketch « Qu'est-ce qu'elle a ma voix ? » au festival de Montreux — dans lequel elle tourne en dérision sa voix rauque — la fait définitivement connaître du grand public. Son parcours de vie à de quoi nourrir son écriture, notamment celle de l'addiction, dont elle s'est libérée, et de son handicap invisible — provoqué par la maladie de Charcot-Marie-Tooth — qui la fait souffrir silencieusement. Doully revient avec son spectacle « Hier j'arrête », au Trianon, aux Folies Bergères et en tournée dans toute la France. Guerre en Ukraine : les Européens sont-ils trop frileux face à Poutine ? Aujourd'hui, Emmanuel Macron reçoit à l'Élysée les responsables des partis politiques représentés au Parlement pour évoquer la situation en Ukraine : un rendez-vous déterminant avant les débats des 12 et 13 mars sur la nature de l'engagement français auprès des Ukrainiens. Le président de la République fait du conflit une priorité absolue de sa politique étrangère, avec la volonté d'en assumer le leadership. En visite en République Tchèque le mardi 5 mars, il appelait notamment à « un sursaut stratégique », soulignant que le moment n'était pas à la « lâcheté ». Des déclarations qui ne font pas consensus : fustigées par les camps de l'opposition en France, elles sont modérément appréciées par les alliés européens et par les États-Unis, qui ont déjà refusé catégoriquement d'envoyer des troupes au sol en Ukraine. Depuis le début de la guerre, l'Allemagne est le deuxième soutien en matière de livraison militaire à l'Ukraine, loin devant la France. Mais jusqu'où les Européens sont-ils prêts à aller pour arrêter la Russie de Vladimir Poutine ? Nos invités en débattent.  Enfin, retrouvez également les chroniques de Marie Bonnisseau et Marjorie Adelson !  28 Minutes est le magazine d'actualité d'ARTE, présenté par Elisabeth Quin du lundi au jeudi à 20h05. Renaud Dély est aux commandes de l'émission le vendredi et le samedi. Ce podcast est coproduit par KM et ARTE Radio.  Enregistrement : 07 mars 2024 - Présentation : Renaud Dély - Production : KM, ARTE Radio

Join us for an extraordinary episode as we delve into the fascinating journey of Derrick Espadas, a remarkable individual whose life experiences have shaped his unique perspective on accounting and entrepreneurship. In this episode, Derrick shares his compelling story of resilience, transformation, and the profound insights he has gained along the way. From overcoming adversity to finding purpose in the numbers, Derrick's journey offers invaluable lessons for entrepreneurs and accounting professionals alike. Tune in as we explore the depths of entrepreneurship, emotional intelligence in financial management, and the power of perseverance. Guest Bio: Derrick Espadas, born in East Los Angeles in 1975, overcame early challenges with shyness and a neurological condition called Charcot Marie Tooth. Despite academic setbacks, including a struggle with addiction, he found his calling in accounting. Graduating with honors, Derrick earned his B.S. in Accounting and Management from the University of Arizona, followed by an MBA from Syracuse University. Now pursuing doctoral studies at Case Western University, Derrick focuses on "Title Prestige" and its impact on decision-making. With a passion for teaching, he recently led courses on Franchising Fundamentals at the University of Louisville. Derrick resides in Tucson with his wife Brenda and their three beloved dogs. *** Guest's Website & Social Profiles *** Derrick's Website- https://www.supportingstrategies.com/locations/tucson-az/ Derrick's LinkedIn- https://www.linkedin.com/in/derrick-espadas-mba/ ***Whether you're a budding entrepreneur navigating the complexities of business, an accounting professional seeking new perspectives, or simply someone inspired by tales of resilience and transformation, this episode is for you. Gain invaluable insights from Derrick Espadas' remarkable journey, and discover the power of perseverance in overcoming obstacles. Don't miss out – hit that

In this episode, we review the high-yield topic of ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Charcot-Marie-Tooth Disease⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠from the Pediatrics section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Orthobullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on Social Media: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠YouTube --- Send in a voice message: https://podcasters.spotify.com/pod/show/orthobullets/message

Charcot-Marie-Tooth (CMT) disease comes with its set of daily mobility challenges, intensified by the search for comfortable and supportive footwear amidst nerve damage, foot weakness, and deformities. In this episode of the official podcast of the CMTA, we explore adaptive solutions that bring hope and enhanced mobility to those living with CMT.  Hosts Chris and Liz O. welcome Tom DuPont for a heartfelt discussion about his life with CMT. Tom opens up about his battle with the disease, from initial diagnosis to finding innovative footwear and support devices that have significantly improved his mobility and quality of life.  Episode Highlights: Tom DuPont's CMT Journey: A look into Tom's early symptoms, the diagnosis process, and how he successfully manages his CMT with adaptive devices and footwear. Innovative Solutions for Better Mobility: Tom showcases the external braces and neoprene silicon boots that have been transformative in his fight for comfort and stability, shedding light on the importance of innovative mobility solutions. The Power of Determination: Highlighting Tom's philosophy of "move it or lose it," this segment emphasizes the importance of staying active to slow CMT progression, inspired by Tom's unwavering determination. A Peek into Future Innovations: Tom discusses the exciting potential of 3D-printing technology in creating personalized mobility solutions for those with CMT, pointing to a future of even greater adaptability and support.  Stay Engaged with "CMT 4 Me" - The CMTA's Official Podcast Join us as we explore personal stories, breakthroughs, and insights within our CMT community. As the official podcast of the CMTA, "CMT 4 Me" is your monthly source of inspiration, information, and community connection. Don't miss out on this empowering experience—join our journey to navigate and improve life with CMT together.  We Want to Hear from You! Your story is powerful. If you're living with CMT and wish to share your experience on "CMT 4 Me," please let us know through our interest form. By joining the conversation, you offer hope and inspire countless others in our community. If you found the information above informative and want to stay up-to-date with topics related to accessibility and disability rights, please follow CMT 4 Me podcast on your favorite platform and our social media channels:   - Instagram: @CMT4Me  - Facebook: CMT 4 Me  - TikTok: @CMT 4 Me  -Join our email list at www.podpage.com/CMT4Me  By following us on these platforms, you'll receive regular updates on news, events, and resources related to Charcot-Marie-Tooth disease and disability inclusion. And if you have a moment, we would greatly appreciate it if you could leave us a rating and review on your favorite podcast platform.   Please note that the transcript provided by Apple Podcasts for the CMT 4 Me podcast is generated using AI models, which may result in inaccuracies or errors in the transcript. If you prefer to consume the podcast with human-generated captions, we invite you to check out our "Raw & Unedited" series on YouTube. Thank you for your understanding and support. CMT 4 Me is an emotional, heartfelt, and humorous podcast for the 3+ million people who have CMT (Charcot-Marie-Tooth disease), their friends, family, and the general public. CMT 4 Me provides a platform for people with CMT to have a voice, describe challenges, find ways to overcome those challenges, and share successes. Another goal is to spread CMT awareness and unite as a community. We will also cover research updates, fundraising, unique stories, interviews with the CMTA community, incluFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

This episode covers Charcot-Marie-Tooth disease.Written notes can be found at https://zerotofinals.com/medicine/neurology/charcotmarietooth/ or in the neurology section of the 2nd edition of the Zero to Finals medicine book.The audio in the episode was expertly edited by Harry Watchman.

Free course ChatGPT4 in medical writing and editing at learnAMAstyle.com ·       Nascentmc.com for medical writing assistance for your company.Visit nascentmc.com/podcast for full show notes Boxed Warning for CAR-T Cell Therapy: The FDA mandates a boxed warning on all CAR T-cell therapies due to increased secondary cancer risks, affecting six named treatments. This follows investigations into T-cell malignancies in patients treated with BCMA- or CD19-directed therapies. Manufacturers have 30 days to comply or challenge this requirement, reflecting the FDA's stance that benefits still outweigh risks.  Dupilumab for Pediatric EOE: The FDA has approved dupilumab for children aged 1-11 with eosinophilic esophagitis (EoE), expanding from its prior approval for older patients. Dupilumab, targeting interleukin-4 and -13, treats EoE, an allergic inflammation causing symptoms like heartburn and difficulty swallowing. The approval, based on the EoE KIDS trial, marks the first FDA-approved EoE treatment for this age group.  Wearable Device for Osteopenia: The FDA has cleared Osteoboost, a wearable belt for treating osteopenia, marking a non-drug medical device approach in this field. Developed by Bone Health Technologies, it uses low-intensity vibrations on the spine and hip, inspired by NASA's bone loss prevention methods. Clinical trials show its effectiveness in maintaining bone health, and it was reviewed under the FDA's De Novo process with Breakthrough Device Designation.  BSI-082 IND for Solid and Liquid Tumors: The FDA approved an IND application for BSI-082, a novel antibody targeting SIRPα and β to enhance tumor-associated macrophages' phagocytic activity. Developed by Biosion USA, Inc., BSI-082 covers over 90% of human populations and avoids broad toxicity typical in CD47-targeting therapies. Its in vivo efficacy, especially when combined with other antibodies, shows significant anti-tumor effects in animal models. VCA-894A for Charcot Marie-Tooth: The FDA approved an IND application for VCA-894A by Vanda Pharmaceuticals to treat Charcot-Marie-Tooth disease, axonal, type 2S (CMT2S). VCA-894A, an antisense oligonucleotide, targets the IGHMBP2 gene variant responsible for CMT2S. CMT2S, a rare condition with symptoms like muscle weakness and sensory impairment, currently has no available treatments; this approval represents a significant step in addressing this genetic disorder. Free course on ChatGPT4 for medical writers and editors learnAMAstyle.com

MedLink Neurology Podcast is delighted to feature selected episodes from BrainWaves, courtesy of James E Siegler MD, its originator and host. BrainWaves is an academic audio podcast whose mission is to educate medical providers through clinical cases and topical reviews in neurology, medicine, and the humanities, and episodes originally aired from 2016 to 2021. Originally released December 21, 2017 Nerve conduction testing should not be as puzzling as it's made out to be. This week, we break it down into individual components and use two case examples to explain how you might interpret this commonly implemented electrodiagnostic assessment. Produced by James E Siegler. Music by Coldnoise, Jessie Spillane, Loyalty Freak Music, and Yshwa. Voiceover by Erika Mejia. BrainWaves' podcasts and online content are intended for medical education only and should not be used for routine clinical decision-making. REFERENCES Allen JA. Chronic demyelinating polyneuropathies. Continuum (Minneap Minn) 2017;23(5, Peripheral Nerve and Motor Neuron Disorders):1310-31. PMID 28968364Kincaid JC. Neurophysiologic studies in the evaluation of polyneuropathy. Continuum (Minneap Minn) 2017;23(5, Peripheral Nerve and Motor Neuron Disorders):1263-75. PMID 28968361Pareyson D, Scaioli V, Laurà M. Clinical and electrophysiological aspects of Charcot-Marie-Tooth disease. Neuromolecular Med 2006;8(1-2):3-22. PMID 16775364Preston DC, Shapiro BE. Electromyography and neuromuscular disorders: clinical-electrophysiologic correlations. 3rd ed. London; New York: Elsevier Saunders, 2013.  We believe that the principles expressed or implied in the podcast remain valid, but certain details may be superseded by evolving knowledge since the episode's original release date. 

Drs. Phil Nowicki of Grand Rapids and Tyler McDonald of University of South Alabama host this year's coverage of the IPOS meeting. Guests include Dr. Woody Sankar of CHOP who discusses hip preservation in Charcot Marie Tooth and balancing our national workforce, Dr. Wade Shrader of Nemours who discusses neuromuscular care including 1st ray fusions, Dr. Bob Cho of the Los Angeles Shriners who presents tips for severe scoliosis cases, course directors Drs. Derek Kelly and Suken Shah who discuss the evolution of the IPOS meeting, Dr. Phil McClure of the University of Maryland who discusses limb length differences, and Dr. Kali Tileston of Stanford who discusses the emotional side or scoliosis bracing. This episode is produced by Tyler McDonald and Phil Nowicki along with Carter Clement from Children's Hospital of New Orleans. Music by A.A. Aalto.

Singer-songwriter Tom Grant has written songs for Tammy Wynette, Eddy Arnold, Ray Price, and Mickey Gilley. He sang with the Glenn Miller Orchestra, on Hee Haw, Pop! Goes the Country, and for years was a regular performer on Ralph Emery's morning show, and The Nashville Network's Nashville Now. In this interview, learn about Grant's career, health challenges -- including living with Charcot-Marie-Tooth disease -- and how growing up in a “Happy Days” type environment gave him a solid foundation for life.

Cette semaine, nous partons en voyage avec Eric. Eric est atteint de la maladie de Charcot-Marie-Tooth. Est-ce que comme moi cette maladie ne vous dit rien ? Eric nous raconte comment il a fait de sa maladie une force. En 2022, il a traversé la France de l'Eure-et-Loir jusqu'à Hendaye pour sensibiliser à la maladie et au handicap. Eric nous raconte ce voyage à vélo de 1 340 km !Dans cet épisode, on se demande comment :➕Voyager hors saison sur la Loire à Vélo et la Vélodyssée

This episode is with my friend Ayda, we met on Facebook, at a time when I think we both needed each other, and I'm delighted we have. She suffers from the condition Charcot-Marie-Tooth disease, this disease may have a silly name, but by no means, is it a laughing matter. We discuss how the condition has slowly impaired her mobility and has taken her life in a different direction, one she was unprepared for. We discuss the mental health issues that stemmed from this condition, one in which is how independent she used to be, and now has to rely on a caregiver, and how that's a struggle mentally for her daily. But as I've told her many times, she is very powerful and wise, and her resiliency is unmatchable. I've seen Ayda cry, one day, and the next day smile, and quickly pull herself out of her depression, the next. She continues to use her platforms to spread awareness about her rare condition, so that they can find a cure, or some remedies to mitigate the problems that she and so many others have. Her TikTok @Greenie0906  Her Instagram https://instagram.com/aydasartstore?utm_source=qr&igshid=MzNlNGNkZWQ4Mg== Her nonprofit organization https://www.aydasanver.com   Cmtausa .org

In honor of CMT Awareness Month, this episode is dedicated to helping listeners navigate the vast seas of Charcot-Marie-Tooth disease. As we sail through September, dubbed #CMTAM23, we're amplifying voices that echo the experiences, challenges, and hopes of over 3 million individuals affected by CMT worldwide. In this special compilation, we weave together the best of 'CMT 4 Me' to highlight both the scientific strides and the deeply personal tales of acceptance and resilience. It's more than just individual stories; it's a collective testament to the spirit of a community striving to spread awareness. So, whether you're familiar with CMT or hearing about this commonly inherited neurological disease for the first time, join us in making waves of change. And while you're at it, consider honoring a CMT star in your life by adding their name to the CMTA's virtual Sky of Fame, a luminous tribute to those navigating the challenges of CMT.Guests Featured:Dr. ZuchnerDavid TannanbaumArda OzdemirCamilla StivinsonBev and Frank WurzelAron TaylorAshley McLeroyDan and John MorganYohan BouchardDr. Glenn PfeifferAnd More!Episode Highlights:The promising landscape of gene therapies and what the future holds.Embracing and navigating the emotional journey post-CMT diagnosis.The importance and strength of community in the face of CMT.Stories of hope, acceptance, and the lessons life with CMT teaches us.The tireless advocacy efforts shaping a brighter future for those with CMT.As we reflect on the stories and insights shared, it's evident that the CMT journey is one of challenges met with determination, heartaches soothed by community, and a collective drive to push forward. Together, we're not just raising awareness; we're building a brighter, more informed future.Want to Share Your Story? Inspired by today's conversations? If you have your own CMT story to share please complete our interest form here to be considered to be a guest on CMT 4 MeStay Connected: To dive deeper into the world of CMT and stay updated on future episodes, join our email community.Behind-the-Scenes: For those curious about the candid moments and raw conversations behind each episode, don't miss our "Raw and Unedited" series on youtube here Tell Us How You Navigate CMT!Within the CMT community, every individual's journey is a testament to resilience and strength. How does one navigate the ups and downs of Charcot-Marie-Tooth disease? The podcast encourages listeners to dial in at (941) 233-5172 and share their strategies, experiences, and stories of navigating CMT. These shared moments have the potential to inspire, bring comfort, and foster deeper connections. Selected stories might even find their way into upcoming episodes, offering insights and encouragement to others. It's a collective effort, weaving together the voices of many into a tapestry of support and understanding. Share your voice and be part of this narrative. #CMT4Me #ShareYourStoryFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

Join us for an enlightening podcast episode featuring Brooke Shapiro, a marketing expert with 15+ years of experience in guiding startups, particularly in the kid/baby/parent-focused space. Discover the keys to successfully marketing to parents and boosting conversion rates on platforms like Amazon. Brooke emphasizes the importance of addressing parents' pain points, showcasing before-and-after results, and maximizing A+ content to convey your product's value effectively. Brooke is not just a marketing pro; she's also the founder of "Sprinkles Parents," a platform providing education, activities, and resources for families with kids under 5 years old. Learn how your brand can benefit from focus groups, testimonials, sampling, and sponsorships with Sprinkles Parents. In her free time, Brooke co-hosts the delightful "Let's Spoon" podcast, where they explore all things ice cream. Beyond her professional work, her most important role is being a dedicated mom to Jace (2018) and Rayna (2020), who face challenges with Charcot Marie Tooth. Brooke's mission is to help brands connect with families, ensuring both brands and parents can thrive. Tune in for invaluable insights into effective parenting marketing and creating a brand that resonates with families. Don't miss this engaging episode – like, share, and subscribe now!  Takeaways:Highlight Before and After Transformation: Show before and after pictures, specifically illustrating the positive changes your product can make in parents' lives. Identify Pain Points: Understand the pain points parents experience, such as the high cost of childcare, diapers, and education. Tailor your marketing to address these specific concerns. Cost vs. Value: Parents are willing to pay more for products that they believe provide value, especially if it solves a problem they're facing, such as helping their child sleep better. Resale Value: Highlight the potential resale value of your products, especially for baby and kids' items, as parents may want to recoup some of their expenses later. Community Building: Building a sense of community among parents can be a valuable marketing strategy. Parents often seek advice and support from others in similar situations. Quality Over Cost: Emphasize the quality and long-term benefits of your product rather than simply competing on price. Quote of the Show:Parents' pain points are the key to successful marketing. Show how your product helps parents sleep, save time, and save money. If you can communicate this visually and in your copy, you'll set yourself up for more success. Links :Website: www.Brookeshapiro.com  LI: https://www.linkedin.com/in/brookeshapiro/ Email: Brooke@brookeshapiro.com  Offer:Would love for them to join my Marketing on the Fly program. Want To Level Up Your Business? Register With Our SponsorsYou can sign up in minutes using your special promo code LEGENDS400 and get your first $400 in reimbursements completely free.Sign up now! 

Listen as Dr. London Smith (.com) and his producer Cameron discuss Charcot-Marie-Tooth Disease with special guest Pappy Lorenzo (Scott Lorenzo).  Sponsored by Caldera + Lab (use code "jockdoc" to get 20% off!). Not so boring! https://calderalab.com/pages/podcast-special-offer?show=Jock+Doc&utm_medium=podcast&utm_source=JocDoc https://www.patreon.com/join/jockdocpodcast Hosts: London Smith, Cameron Clark. Guest: Scott Lorenzo. Produced by: Dylan Walker Created by: London Smith

Prepare to Embark on an Inspirational Journey!Meet Kenneth Hill Jr., a man whose life is a testament to determination, growth, and the transformative power of martial arts. From various martial arts  to self-discovery, from despair to triumph, Kenneth's story is a journey we all can learn from.What's Inside This Episode:Kenneth's Path Through Martial Arts: From discipline to healing, discover how martial arts shaped Kenneth's life.Strength in the Face of Struggles: Hear Kenneth's open sharing of his dark moments and the hope they bring.Living Life with Positivity: Learn about Kenneth's philosophy of "good days and better days."Before You Go, Don't Miss This:Don't miss this opportunity to connect with Kenneth Hill Jr. and plunge  into a story that transcends martial arts and adversity. Join us on "CMT 4 Me" as we explore stories like Kenneth's that enrich, inspire, and unite our community. Together, we're spreading awareness about Charcot-Marie-Tooth disease (CMT) and building connections that last. Follow "CMT 4 Me" wherever you get your podcasts, and help us spread the word. Your support takes us one step closer to a world where voices like Kenneth's are heard, celebrated, and embraced.Your Guide to the Episode:Introduction - Meet Kenneth: (00:00)A Journey Through Martial Arts: Exploration of disciplines (05:00)Finding Strength in Struggles: Kenneth's resilience and healing (10:00)Embracing a Positive Outlook: Kenneth's view on life (15:00)Kenneth and CMT - A Connection: Alignment with our mission (20:00)Want to be part of this CMT family? Here's how:Follow Us wherever you listen to podcasts: Never miss an episode that resonates.Leave a Review:Share what CMT 4 Me means to you. Your words deeply inspire us.Dive into Our YouTube Channel-Want to go deeper with CMT 4 Me? Head over to our YouTube channel for extra content that informs, inspires, and connects.Together, we walk as advocates, friends, and family - on a journey of compassion, triumphs, and hope. Follow CMT 4 Me today and join a community always here for you. Let's continue this beautiful journey, hand in hand, heart to heart.For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Yip Pin Xiu, Singapore's Accomplished Athlete Speaks Out Against Treatment of People with Disabilities and Women's Roles in Society In Episode 3, I am proud to host Yip Pin Xiu, a remarkable Singaporean backstroke swimmer and five-time Paralympic gold medalist! Diagnosed with Charcot-Marie-Tooth syndrome at the tender age of 2, Pin Xiu lost her ability to walk and moved into a wheelchair at the age of 13. However, these obstacles only fueled her spirit: embracing swimming not only bolstered her muscles and well-being, but also paved the way for a remarkable journey of achieving extraordinary athletic feats over the years.

Today we're talking about talking – finding openness and trust in our leadership and our relationship with the people around us, and unlocking authentic leadership in the process.Peter de Silva is a highly experienced financial industry executive and board member. A former Harvard University Senior Fellow for the Advanced Leadership Initiative, he is the author of ‘Taking Stock – 10 life and leadership principles from my seat at the table' just recently published in March this year.As Retail President for online stockbroker TD Ameritrade, he was responsible for the $5bn retail business segment and 5,000 employees. He also served as President of Scottrade Financial Services and UMB Financial Corporation, as well as being a senior leader at Fidelity Investments.As well as his extensive business career, Peter is also shaped by his experience with a debilitating neurological condition, Charcot Marie Tooth (CMT) disease, something he chose not to share with others for decades. He says “I believe that life experiences test the impressions people hold, values they set and believe, or a set of actions that people might want – or not want – to emulate."I'm looking forward to hearing more about his journey in business and in life, how he balanced wellbeing and work, and the moments of remarkable clarity that shaped his path.--Peter de Silva: https://peterjdesilva.com/Peter de Silva on LinkedIn: https://www.linkedin.com/in/peter-j-desilva/Taking Stock: 10 Life and Leadership Principles from My Seat at the Table: https://www.amazon.co.uk/Taking-Stock-Leadership-Principles-Table/dp/B0BZF9GG7Z

In this moving episode of the CMT 4 Me podcast, your hosts Liz O. and Chris, a dynamic brother-sister duo, welcome a special guest, Camilla Stivenson, who shares her unique journey with CMT Dominant Intermediate E (CMT-DIE) which is one of the rarest types of CMT. Born in Uzbekistan and raised in Sweden, Camilla's story is one of tragic loss but highlights her positive spirit and her deep desire to live life to the fullest.  She opens up about her diagnosis with CMT-DIE and the challenges she faced growing up. From frequent falls to progressing to a kidney transplant, Camilla's experiences shed light on the realities of living with this rare type of CMT.Despite the struggles, Camilla's optimism shines through as she shares her story with the hope of inspiring others. This episode is a testament to the human spirit's ability to persevere, even in the face of adversity.Join us as we explore Camilla's story, discover more about CMT, and raise awareness about CMT.  Let's listen, learn, and make a difference together.Highlights:Camilla's personal journey from childhood in Uzbekistan and Sweden to her diagnosis with a rare type of Charcot-Marie-Tooth diseaseA look into the characteristics of CMT-DIE, a rare form of CMT that can cause not only mobility issues but also kidney failure. Learn about Camilla's resilience and her aspiration to motivate others. Explore her journey of overcoming challenges, with specific examples that showcase the strength of the human spirit to endure during the most challenging times. This is an enlightening episode illustrating Camilla's journey. Listen, learn, and share her story of resilience with your community. 0:00 - Introduction and lighthearted banter among hosts LizO. Chris, and guest Camilla.0:05 - Discussion about travel plans and the hosts' desire to visit Nordic countries.0:10 - Camilla shares her background, being born in Uzbekistan and moving to Sweden at age 11.0:15 - Camilla opens up about her mother's passing due to kidney failure and being raised by her father's parents.0:20 - Revelation of Camilla's rare type of Charcot-Marie-Tooth disease (CMT-DIE) and the onset of symptoms around age 12.0:25 - Camilla's diagnosis with CMT-DIE at age 14 or 15 and the emotional impact it had on her.0:30 - Discussion about the challenges Camilla faced, including the lack of support and complicated family dynamics.0:35 - Camilla's positive outlook and her hope to inspire others through her story.0:40 - Closing remarks, encouraging listeners to tune in, share the episode, and raise awareness about CMT-DIE.For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Monica Michelle is joined by activist Lisa Weiner.Lisa lives with Charcot Marie Tooth Disease and Scoliosis.In this episode, Monica and Lisa discuss: Growing up with CMT and ScoliosisDealing with bracesLiving and moving around San Francisco with a chronic illnessFinding community resourcesDiscovering simple tools that can help with daily activitiesTIMESTAMPS0:37 - What is Charcot Marie Tooth Disease?4:42 - Lisa's experience growing up with CMT19:07 - Braces are no fun24:47 - Center for Independence of Individuals with Disabilities20:30 - CMT Association Awareness Month31:55 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

In this episode I speak with life Coach Kyal Currant about his battles with Mental Health & Living with Charcot-Marie-Tooth

In this enlightening episode of "CMT 4 Me," hosts Chris and Elizabeth welcome Arda Ozdemir, a spiritual mentor, executive life coach, and author. Arda shares his transformative journey from a finance executive to a life coach, and how understanding and managing stress can lead to better health and wellbeing. This episode is a must-listen for anyone seeking to navigate the emotional challenges of living with Charcot-Marie-Tooth disease.Key TakeawaysUnderstanding your stress and the role of repressed feelings in our reactions to life situations can lead to better health and wellbeing.The grieving process is a crucial part of coming to terms with a diagnosis like CMT. Acknowledging one's emotions and feelings is an important step towards acceptance and new beginnings.Arda's journey from a finance executive to a life coach demonstrates the power of personal transformation and the potential to find new purpose in life.This episode is a testament to the power of personal transformation and the importance of emotional wellbeing. Whether you're living with CMT or know someone who is, Arda's insights offer a fresh perspective on navigating life's challenges. Don't forget to share this episode with your community and help spread the message of hope.Timeline Summary 00:00 - 02:30: Introduction of hosts Chris and Elizabeth and guest Arda Ozdemir.02:30 - 10:00: Arda shares his personal journey from being a finance executive to becoming a life coach.10:00 - 25:00: Discussion on understanding stress and the role of repressed feelings in our reactions to life situations.25:00 - 40:00: Arda talks about the grieving process when diagnosed with a disease like CMT and the importance of acknowledging one's emotions and feelings.40:00 - 52:25: Closing remarks, Arda's final thoughts, and outro.ResourcesLearn more about Arda and his work at Rise 2 RealizeCheck out Arda's books, including "The Art of Becoming Unstuck," available on AmazonRead more about Arda's journey and his approach to coaching on his About pageFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

Get ready for a hilarious and insightful episode of P.S.A the Mental Health Podcast! In season 7, episode 3, the host Izzy interviews Paralympian Jamal Hill, covering everything from the importance of mental performance to why black people can't swim. The episode kicks off with a discussion on the significance of guarding your thoughts, as stated in Romans 12:2 and Philippians 4:8, and quickly moves into a variety of engaging topics. Izzy and Jamal talk about the struggles of not feeling fulfilled in their job, the importance of getting enough sleep and rest, and the impact of anxiety on our lives. One of the highlights of the episode is when Izzy shares his own personal experience with performance anxiety while playing sports back in the day, leading to the hilarious meme "Don't worry, your beloved team isn't the only one with a talent for choking under pressure. It's a universal sport!" As the episode progresses, Jamal discusses his foundation, Swim Up Hill, which aims to teach one million students how to swim annually by the fall of 2028. He emphasizes the importance of mental health and mental performance and shares his journey of regaining his mobility and becoming a competitive swimmer after being diagnosed with Charcot-Marie-Tooth at a young age. The episode also features a game time segment on mental performance, where Izzy and Jamal discuss hypothetical situations such as swimming in Hong Kong or Paris, coaching a group of 4-year-olds or 84-year-olds, and dealing with performance anxiety during a local meet versus the Olympics. If you're looking for a fun and informative episode of P.S.A the Mental Health Podcast, then this one is a must-listen! Keywords: mental health podcast, mental performance, black people can't swim, performance anxiety, student Gabe and dancing, decision fatigue, Charcot-Marie-Tooth, Swim Up Hill Foundation, mental health and well-being, relaxation training, thought shopping, labeling, deep breathing, gametime, and overcoming obstacles.For all your writing needs, Grant writing Homework Assistance, Resumes, Cover Letters, Templates, Media Kits, Product and Profile Descriptions and more, please visit psathepodcast.com Jamal Hill's social media Instagram: @swimuphill Website: https://www.flowcode.com/page/swimuph...

Welcome back to the Off Trail Podcast. Today we have the privilege of speaking with the one and only, Jenga! We begin the show through power of technology being connected through many times zones and across the world. Jenga is currently in New Zealand and takes the time to sit down and chat about the hike he is currently on, The Te Araroa, and more generally his incredible view on hiking and life. We dive into his somewhat ok-ish definition of thru-hiking and his sewing pursuits. Then quickly we dive deep and stay deep within the waters of what makes him, well him. We chat about the trail being a framework to live life outside of the binds of a classically defined society, we talk not being able to resist the call of side adventures, and we briefly touch on the wonderful animal called a sheep. We then go into the word adventure itself. The very reason Jenga lives this life and the word that fuels him. We chat failure and success and compare and contrast the word adventure and thru-hike. We hear stories of the CDT and talk about scars upon the body that are fond memories. We then learn about a disease that will one day without choice stop Jenga's hikes, it is called Charcot-Marie Tooth disease. (Please correct us if we are wrong Jenga, while listening to the word, tried to Google it and this is what came up) A disease that eventually eats away at the muscle connections and creates muscular dystrophy. We chat difficulty lifting toes, selfies of things that are tripped on, and being intentional about time. Another massive kudos to Jenga, for the healthy and happy mindset around something that could be very hard to mentally deal with. We chat about looking for ways to extend time in the outdoors, a scary future but the realization all futures are unknown, and having as he puts it, "the good fortune to know when my car crash is." We talk about the healing powers of hiking for mind and body, and the price of owning muscles. We chat artistry and take a virtual look through his lens of photography. A little voice that tells him "pretty" and a voice that puts him fully in the moment. We chat water miraculously not flowing downhill in New Zealand, capturing the essence of a thru-hike, and moments of beauty within simply, life. We discuss light, the expensive organs called eyes, and then we all get drenched by rain. A deep look into the year of 2022/2023 on the Te Araroa Trail and the constant never ending rain. We talk flooding, demoralizing wetness, and mold and mildew. We chat the scariest river ford he has ever experienced, and the realities of the looney tunes world called New Zealand. We chat breaking trekking poles, being inside of never ending clouds, and something called Lemonade Pass. Not a pass on the trail, but a anecdote on how he handles uncomfortable situations. He makes lemonade. We chat breaking a pure goal mentality and letting the journey take you where it will. We chat a month of time off trail and what could break some hikers, was just part of the experience for him. We chat naked bike rides, being a snow positive person, and not doing a trail because they are easy. We wrap up the show with a word that can be felt in this entire conversation and the meaning of trails and life for Jenga, freedom. Thank you for joining us and sharing your story! To learn more about Jenga: Instagram: @jengadown To learn more about who we are click below: ⁠⁠Website: www.ElevenSkys.com

Mandy and Kate chat with ABC national disability reporter Nas Campanella! Nas is blind and has Charcot-Marie-Tooth disease, and is currently on maternity leave looking after her baby son Lachlan. Nas' twelve-year journalism career was inspired by her childhood love of radio, her desire to make a difference and the example her mother set for her to always fight for access and opportunities. Nas started in community radio at age 15, completed a journalism degree, undertook many unpaid internships and finally landed a coveted cadetship opportunity in the ABC Sydney newsroom, which led to stints in regional radio and as a newsreader for Kate's favourite station Triple J. Prior to joining the ABC, Nas was often underestimated and subjected to dismissive and discriminatory experiences while trying to build her career. She's now proud to be a role model for people with disabilities who dream of embarking on a media career. Nas also shares her story of becoming a mum to her little boy Lachlan. She discovered a health system that has substantial gaps in knowledge and services for parents with disabilities but has learned to adapt and figure out parenting her own unique way. Thanks for sharing your story with us Nas! Follow Nas on Instagram Buy our book The Invisible Life Of Us!Listen to our Spotify playlist –Too Peas: Songs Our Guest Peas LoveMelbourne forecast for Thursday February 23 - Mostly sunny, 33 degrees Join our Facebook HangoutFind us on YouTubeHelp spread the love for Too Peas by rating and reviewing us!Leave us a speakpipe Thank you for supporting Too Peas In A Podcast! We love to hear from you, please contact us here: Website: www.toopeasinapodcast.com.auEmail: toopeaspodcast@gmail.com Hosted on Acast. See acast.com/privacy for more information.

In this episode, we review the high-yield topic of Charcot-Marie-Tooth Disease from the Pediatrics section. Follow Orthobullets on Social Media: Facebook: www.facebook.com/orthobullets Instagram: www.instagram.com/orthobulletsofficial Twitter: www.twitter.com/orthobullets LinkedIn: www.linkedin.com/company/27125689 YouTube: www.youtube.com/channel/UCMZSlD9OhkFG2t25oM14FvQ --- Send in a voice message: https://anchor.fm/orthobullets/message

The holidays can be difficult for most anyone but if you live with a chronic health condition and/or physical disability, the barriers to joy and festivity may increase. Four women engage in conversation about coping with the holidays -- Leslie Krongold with myotonic muscular dystrophy, Andrea Klein with collagen 6 congenital muscular dystrophy, Janice Laurence with Charcot Marie Tooth neuromuscular disease, and Roma Leffmann who advocates for people with acquired disabilities as a stroke survivor.  Together they discuss issues related to #dysphagia #celiacdisease #incontinence #osteoporosis #singlelife #disability #myotonic #musculardystrophy #respiratoryproblems #stroke #adaptivefitness #dance #glutenfree #ableism #gifting #mobility and, of course, #coping  

Born with hereditary peripheral neuropathy, also known as Charcot-Marie-Tooth disease, Dave Oferal had an awakening.  With his early years defined by bullying, theft, alcohol abuse, arrests, and other devious behaviors, Dave woke up one day not feeling good about himself and determined to rid himself of bad habits.  So he decided to bury his head in studying psychology - he has been doing so ever since - and has developed a new appreciation for finding the truth.  To reach Dave, email info@cmtstrong.com.

This week, I'm excited to welcome Max Casa to the podcast. Max is the founder of Max Vitality, a company centered around the practice of sensory deprivation or float therapy. Floating is designed to optimize recovery after exercise and can be beneficial for anyone interested in bringing their physical, mental, and spiritual health to the next level. In this episode, we discussed the principles behind floating, what to expect from your first session, and also the importance of minerals. Some questions asked during this episode: What is sensory deprivation and how can it be of benefit to our health? What should we expect from our first float session? How important is the solution (magnesium) when floating? https://180nutrition.com.au/180-tv/ Stu (00:41) Okay, back to the show. This week I'm excited to welcome Maxto the podcast. Max is the founder of Max Vitality, a company centered around the practice of sensory deprivation or float therapy. Floating is designed to optimize recovery after exercise and can be beneficial for anyone interested in bringing their physical, mental, and spiritual health to the next level. In this episode, we discussed the principles behind floating, what to expect from your first session, and also the importance of minerals during the experience, over to Max. Hey guys, this is Stu from 180 Nutrition and I am delighted to welcome Max Casa, to the podcast. Max, how are you mate? Max (01:25) Doing well, brother. Pleasure to be here. Stu (01:27) Fantastic. No, look, thanks for your time. Much appreciate it, I know you're probably, a busy guy. But first up, for all of our listeners that may not be familiar with you or your work, I'd love it if you could just tell us a little bit about yourself, please. Max (01:41) Sure. Yeah. So I'm a lifelong martial artist. I guess, a good place to start. My parents actually got me involved in the martial arts when I was just four years old, which was the biggest blessing for me. They're originally getting me involved in martial arts with the hope to help the neuromuscular disease, I was born with called Charcot-Marie-Tooth or CMT, for short. And they're trying different therapies and stumbled upon the martial arts, pretty early on. And thankfully, it was the martial arts and thankfully I stuck with it because it's become a huge part of my life, man, these past 20 plus years now. Yeah. And just as I got older and started teaching and competing in the martial arts more, I was just constantly looking for ways to optimize my mind and body. So try just about every therapy in the book from high quality western technology to South American bruise and eastern medicine and everything in between. Max (02:38) But one day, about probably eight, nine years back now, I stumbled upon float therapy and my life totally changed, man. And I remember, so I went out... I was living in Massachusetts at the time and ended up going to a float center in Massachusetts, getting into tank and coming out of the tanks to... And I was literally, just buzzing with this sensation of relaxation and inner peace that I had never experienced before in my entire life. So ultimately, I ended up floating more the evidence into the research deeper and deeper and ultimately, became so inspired that I ended up starting my company Max Vitality, where we manufacture, customize, and install flow therapy chambers, all over the globe. For full interview and transcript: https://180nutrition.com.au/180-tv/max-casa-interview/  

In this episode I interview Nas Campanella, new mum to baby Lachlan and a disability affairs reporter for the ABC. Nas is visually impaired and has a neurological condition that affects her dexterity and balance, so her journey to motherhood has required a lot of active preparation and planning. She talks in detail about the discussions she had with obstetricians pre-conception, her exemplary care during pregnancy and birth, the guidance she received from occupational therapists and the practices she's embraced in postpartum to adjust to new motherhood. As well as sharing a list of practical products that have helped her navigate day to day life with a baby, she discusses the warm and welcoming support she's received from her family, postpartum doula, mothers groups and friends. You'll love this episode. Thank you, Nas!

Comin' at you! What do you get when you mix chaotic creativity with organized comedy? You get the #1 CMT Podcast available today: CMT 4 Me. Despite being polar opposites, this brother-sister team brings it all together in an exciting and informative series focused on all aspects of CMT. Meet Chris and LizO Chris and Elizabeth Ouellette), dedicated siblings on a mission to magnify the voices of individuals with CMT, share their challenges and success stories, and raise awareness of Charcot-Marie-Tooth disease.HighlightsAs kids, they learned homelessness was not someone else's problem.Giving back is so much more than pizza and donuts for Halloween.The incredible reasons why they Cycle 4 CMT.Out to kick CMT's ass. No questions asked.Where it's at: cycle4cmt.com

Navigating teenage years can be difficult, especially when you are suddenly diagnosed with a weird-sounding debilitating disease like Charcot-Marie-Tooth. As a 13-year-old Pakistani kid living in the UK, Zac was forced to confront daunting medical predictions, social pressures, harmful stigmas, and his own internal battles. Join us as we hear how Zac pulled himself out of multiple periods of depression and denial and learned to embrace his new life of fitness, connection, and purpose.Get out your notepads as we explore what it looks like to raise happy, independent and fulfilled disabled adults!Follow Zac on Instagram. Looking for more great tips, hacks, and blog posts? Visit: Trend-Able.comFind more on Charcot-Marie-Tooth (CMT) and patient resources on: HNF-cure.orgFollow us on IG! @embraceit_podcast | @trend.able | @cmtwegotthisPlease leave us a review and help others find us! Hosted by Lainie Ishbia and Estela Lugo.Embrace It is produced by Launchpad 516 Studios.For sponsorships and media inquiries, drop an email to: embraceit@lp516.comSubscribe to Embrace it with Lainie and Estela on Apple Podcasts and get notified of new episodes! https://podcasts.apple.com/us/podcast/embrace-it-with-lainie-estela-smashing-disability-stigmas/id1468364898

Musician Eliza Hull has a condition called Charcot-Marie-Tooth which affects her mobility, and for many years she tried to hide it. But after she had a daughter, she became proud of her disability

Musician Eliza Hull has a condition called Charcot-Marie-Tooth which affects her mobility, and for many years she tried to hide it. But after she had a daughter, she became proud of her disability