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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, including board members, branch leaders, and CMTA team members. Have a story you’d like to share? Write to info@cmtausa.org. You may be our next guest on the new CMT 4 ME podcast! For more information on the CMTA, please visit our website: cmtausa.org
35 Episodes
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In this special replay, we revisit the riveting conversation with Dr. Stephan Züchner, a beacon of hope in the realm of genetic research for Charcot-Marie-Tooth (CMT) disease. As the chair of the Department of Human Genetics at the University of Miami Miller School of Medicine, Dr. Züchner has been at the forefront of groundbreaking discoveries that have the potential to transform the lives of those affected by CMT. This episode sheds light on Dr. Züchner's journey from the vibrant streets o...
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, ...
Finding the right shoes when you have CMT can be a major challenge. The CMTA presents CMT 4 Me, its official community podcast. Join hosts Chris and Liz O. as they share a conversation with podiatrist Dr. Greg Stilwell and his intern Brandin Irwin about how to navigate footwear choices with CMT and innovations that could change the game. When nerve damage in your feet causes weakness and deformities, comfort is elusive and stability hard to come by. Dr. Stilwell shares his expertise on managi...
The CMTA presents CMT 4 Me, its official community podcast. Join hosts Chris and Liz O. as they pull up a chair with three passionate CMTA advocates: Gilles Bouchard, Jeana Sweeney, and Laurel Richardson. In an honest, free-flowing panel conversation, this group shares their wisdom about life with CMT. From the frontiers of science to profoundly personal stories of family unity, they offer rare insight into the challenges and indestructible solidarity of the CMT community. Highlig...
Join us for a heartwarming chat with 10-year-old Hazel and the Coldiron family on CMT 4 Me! 💫 Discover how they face CMT with unwavering positivity and determination. Hazel's advice for an awesome life? "Don't let CMT limit you, be proud of who you are, and focus on what you can do." 🌟❤️ 🔹 Hazel's uplifting take on CMT and her leg braces 🔹 The Annual Coldiron Derby for CMTA fundraising 🔹 Hazel's incredible journey of courage and resilience 🔹Hazel’s mantra – be all you can be with ...
In this poignant episode, we're honored to share the deeply personal story of Rick Biagiola, an accomplished drummer who rose to fame with the 1960s rock band The Outsiders. Known for their hit "Time Won't Let Me," the band brought Rick recognition across the country during the peak of his youth. Little did he know then that in later decades he would face the daily tribulations of living with CMT. He was Diagnosed with CMT 2F later in life and after years of mysterious symptoms, Rick candidly...
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...
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 op...
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 challen...
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 Takeaways Understanding your stress and the role of ...
On this episode of the CMT 4 Me, Chris and Liz O introduce Edmonton CMTA Branch leader Victoria Berezovich. Victoria is known as CMT Barbie because she is a model with Kello Inclusive. She’s also one of the stars of the docu-series Push which takes place in Canada and gives viewers an inside look at a diverse group of people living with physical disabilities. Are you ready to be moved by Victoria's story? Here are three impactful moments you won't want to miss: - Finding a supportive co...
In this episode, we hear from Jeff Seitzer, a stay-at-home dad, and author of "The Fun Master," who was diagnosed with CMT at a young age. Despite facing incredible challenges, Jeff has shown remarkable resilience and positivity. He shares his story of how he learned to find joy in the face of hardship and triumph over tragedy. Jeff discusses his journey of finding what works best for him when it comes to managing CMT. He emphasizes the importance of discovering what works best for each indi...
In this episode of CMT 4 Me, Chris and Liz O. meet with Dan and John Morgan, two brothers with CMT to discuss their experiences living with the disease. As brothers, Dan and John have a unique bond and understanding of each other's struggles with CMT despite having contrasting daily lives. Main Takeaways: -Life is full of challenges that will test your limits and it's important to accept that and focus on what you can do to achieve better outcomes. -Dan and John also share their...
In this episode of the CMT 4 Me podcast, we are joined by Ashley, a rehabilitation engineer with CMT. Ashley shares with us what a typical day looks like for her and what her focus is, which is to use her engineering background to improve people's lives. Ashley works with individuals to modify their homes and work sites to make them more accessible, as well as helps students with technology to complete their assignments. During the conversation, Ashley shares some of the amazing projects she ...
Happy New Year! Thank you for tuning into the first CMT 4 Me episode of 2023! We are excited to kick off the year by sharing the story of Maddie, a young woman in grad school at the University of Virginia who was diagnosed with Charcot-Marie-Tooth Disease at age 12. In this episode, Maddie shares: Insight into how she copes with CMT and deals with inner dialoguesTips for newly diagnosed individualsStrategies for introducing herself as a person with CMT to the worldThe importance of support sy...
Do you try to ignore your CMT? Do you keep those feelings bottled up inside because you don’t have anyone with whom you can relate? Do you think no one will understand? Maybe you feel like it is nobody’s business but your own... Psychotherapist David Tannenbaum felt the same way until he connected with the CMTA community, where he found freedom, acceptance, and unconditional love. Attending CMTA-led support groups, branches, and patient conferences, David met many people from all walks of lif...
An old soul with a big heart, Jonah Berger brings wisdom and youthful energy to every moment of every day. In this episode of CMT 4 Me, Jonah gets personal about his upbringing, family life, the Pickle Witch (yes, the Pickle Witch!), the CMTA's future leaders, and Camp Footprint – camp for kids with CMT. Explaining the success of Camp Footprint, Jonah points out, "This one-week sleepaway camp for kids with CMT is truly unique. Every camper fits in, feels free to let their guard down, an...
The CMTA has evolved and grown exponentially over the past 20 years, and if you have not been around to witness the transformation, you need to listen to the voices of longtime CMTA volunteers and branch leaders Beverly and Frank Wurzel. Beverly and Frank Wurzel have spent the past 20 years of their lives spreading CMT awareness and raising funds for CMTA STAR research. Their raw determination, motivation and never-say-never attitudes are not only commendable but also incredibly awe-ins...
Julia and Herb Beron share a moving story of courage, resilience, and autonomy. Julia's never known life without CMT. Having had falls, foot and knee surgeries, hearing loss, and a diagnosis of Type 1 diabetes, Julia, with her family's unconditional support, keeps moving forward with grace, independence, and self-confidence. Hear her story. Learn her secrets. Watch her future. It's going to be amazing! Highlights Who is Sally and how did she give Julia so much freedom?The best da...
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-Mar...
Looking for a good Physical Therapist (PT)? Tips for CMTers by a PT with CMT: Kelly Chilson Dsc, DPT, COMT *Kelly addresses questions from the CMTA Facebook Discussion Group. *As an insider, Kelly gives advice on recovering well from reconstructive CMT foot surgery, with 3-year-old twins to boot! *PT ALERT! When clients judge before thinking. WTH? *The happiness tip of the Month! Kelly has been a PT for 15 years, focusing on orthopedics, balance, and neuromuscular disorder...
Direct, refreshing, and vibrant, Liane Schirmer talks about her late-set CMT diagnosis with humor and acceptance. As an actress in a world where roles are quite scarce for people with physical impairments, her career was on the line, and her future looked bleak. Fearing rejection, she questioned the sanity of pursuing a physically demanding and energy-draining job that required costume changes, specific shoes, and navigating a dimly-lit stage. She seriously struggled with self-doubt, fear, an...
Tom duPont is a successful entrepreneur, community leader and family man living with CMT. Early in his diagnosis, he decided to meet CMT head-on by trying many different therapies, embracing those which slowed down the progression of his CMT symptoms. Tom’s persistence has paid off, as he can still golf, sail, work and walk his brand new 6-month-old Labrador! Unlike his 2 siblings, whose CMT is immeasurably worse, Tom believes in a healthy lifestyle and staying as active as possible. Jo...
Dr. Glenn Pfeffer reveals a fib he told his first CMT patient.No one with a crooked foot should live with it!The goal of CMT foot surgery? Make the foot flat.Avoid Amputation.Ankle fusion – No, thank you!Hope is alive. Dr. Glenn Pfeffer is the Director of the Foot and Ankle Surgery program at Cedars-Sinai in Los Angeles. Having performed over 700 CMT foot surgeries, Dr. Pfeffer has dedicated his life to straightening the CMT foot, enabling people to regain their ability to walk with eas...
Feel the fear and do it anyway.The moment Bethany realized body and mind were sick.Overwhelmed, Anxious, and Depressed.The shocking things people say!Marriage: Support is a 2-way street.In her 30 years on this planet with CMT, author, CMT community advocate, teacher, and YouTube influencer, Bethany Meloche, has led a full and enriching life filled with adventure, travel, reflection, and passion. When COVID spread throughout the world, long shadows crept into her everyday existence, creating i...
Psychotherapist turned coach, author, and NeuroChangeSolutions trainer Abby Havermann, mom of a child with CMT 2A, focuses on taking charge of her life by consciously choosing who she wants to be every day. Incorporating the teachings of researcher Dr. Joe Dispenza, Abby is raising her son, Jaden, to connect with his emotions, find his inner power, and tap into his limitless potential. Abby has created a unique platform for Jaden to master his thoughts and move beyond perceived limitations us...
Kenny’s heart-felt narrative reveals the life of the man with a wicked sense of humor and a wealth of CMT knowledge. Despite his CMT-related breathing issues, upcoming foot surgeries, and chronic pain, his deep laughter defines a go-forward and don’t look back kind of attitude. Kenny Raymond is an author, blogger, podcast host, genetic whiz, CMTA Advisory Board member and Facebook moderator. His website, the Criptid Sloth (thecryptidsloth.com), is a go-to resource for those seeking ea...
Katerina’s CMT symptoms seemed to materialize overnight. As a senior in high school, she went from being active and carefree to living with inexplicable pain and fatigue. Many docs chalked up her complaints to depression, stress, anxiety until, one day, she tested positive for a recessive type of CMT (CMTRIC), as did her three siblings. The odds of all 4 siblings having a recessive type of CMT is 1 in 250!Today, 21-year-old Katerina is a college student who shares her experiences through her ...
Stringing words together in captivating rhyme, CMTA Branch Leader and passionate volunteer Aron Taylor, mesmerizes with his stories of facing the challenges imposed by CMT from a very young age. Aron produced and released several hip-hop albums over the past 15 years, including CMT-related songs such as “The Life You Love” and “Supergimpin. Aron’s energy, inspiration, and enthusiasm will make your day shine. Listen, Learn, and Love! Watch Aron in Action: https://www.youtube.com/watch?v=...
CMTA CEO Amy Grey and CMTA Chairman Gilles Bouchard get real and personal as they discuss the CMTA’s ongoing success as the #1 CMT organization globally. This multi-dimensional dynamic duo, with deep roots in the charitable foundation profession and tech industry, sheds light on how the CMTA, a small but efficient organization, is setting standards of excellence in the non-profit sector. With the backing of our community, CMT clinicians, world-renowned scientists, researchers, and an increasi...
Today, Jeana Sweeney is the CMTA’s Director of Development. When her daughter, Rylee, was diagnosed at a young age with CMT, her world shattered into tiny shards of grief. With the support of a loving husband, family, and friends, Jeana picked up the pieces and chose to fight with all her might to guarantee a promising future for her daughter, grandchildren, and the CMTA community. A lover, a fighter, and a mother on a mission, Jeana is one of the most passionate and influential spokespersons...
Genetic genius Stephan Züchner, M.D., Ph.D., is a professor and chair of the Dr. John T. Macdonald Foundation Department of Human Genetics at the University of Miami Miller School of Medicine. His work focuses on identifying new disease-causing mutations in CMT patients. Dr. Züchner and colleagues recently discovered that mutations in the sorbitol dehydrogenase gene (SORD) causes a recessive, axonal form of CMT that may be treatable. Learn all about his exciting research pointing to pos...
Erin Black and Emmily Stufflet share their unique perspectives on staying positive with CMT. With an emphasis on friendships and community, these insightful young women show how their own personal resilience is interlaced into the resilience of the communities to which they belong. Drawing strength from one another and their CMTA family, their connections and bonds give them the strength and determination to meet life challenges head-on. For more information about CMT and to support the CMT...
Yohan Bouchard was diagnosed with CMT (Charcot-Marie-Tooth disease) at age 7, resulting from a new, spontaneous mutation. With the mind of a warrior and the support of family, friends and the CMT community, Yohan deals with CMT using integrity, compassion, and insight. Living in the now, Yohan willingly accepts the challenges of CMT, skilfully redirects its forces and creates positivity and hopefulness for all. For more information about CMT and to support the CMTA, please visit www.cmtausa....
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, includ...
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