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 of Berlin to the cutting-edge labs of Duke University and beyond. His relentless pursuit of understanding the genetic underpinnings of CMT has led to the identification of critical mutations, opening new avenues for targeted therapies.

Dive into an engaging discussion that spans the discovery of the SORD gene mutation, offering a glimmer of hope for a significant subset of CMT patients, to the innovative approaches in gene therapy that are on the horizon. Dr. Züchner's work not only illuminates the complex genetic landscape of CMT but also underscores the power of collaboration and data sharing in the scientific community.

As we re-examine this enlightening dialogue, join us in celebrating the strides made in genetic research and the ongoing quest to unravel the mysteries of CMT. For those who wish to support this vital research and the broader CMT community, please consider visiting CMTA USA.

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

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. 

• 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. 

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. 

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:  

-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

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

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 managing CMT complications and demonstrates his innovative “Stand Strong Arch Support” designed to redistribute pressure points and provide a custom fit. Stay tuned for personal stories and a look into emerging 3D printing technology that may provide customized orthotics adapted to each person’s CMT progression.

Highlights:

• Dr. Stilwell explains how growing up with family members with CMT led him to become a podiatrist. He provides an overview of CMT foot deformities.
• He demonstrates his innovative "Stand Strong Arch Support" product designed to redistribute pressure points on the foot.
• The conversation explores using 3D scanning and printing technology to create customized orthotics that adapt as CMT progresses.
• They share personal stories about the challenges of finding proper footwear with CMT and other nerve diseases.
• Dr. Stilwell expresses his dedication to continuing research and helping bring emerging technology to improve quality of life for the CMT community.

Stay connected with us! Follow CMT 4 Me to keep up with our monthly episodes spotlighting stories and advancements important to our community.

Join Our Conversation: We want to hear from you! If you're interested in sharing your CMT journey on the podcast, please fill out our interest form. You could be the voice that inspires others.

Explore More: Check out CMT 4 Me Raw and Unedited on YouTube for more in-depth conversations.

For more on CMT and the CMTA, please visit www.cmtausa.org and sign up for emails on our website.

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? Fill out our CMT 4 Me Podcast Interest Form: cmtausa.org/cmt4me. 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

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

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. 

Highlights:

• Gilles Bouchard shares updates on CMT research and the impact of the STAR program.
• Jeana Sweeney shares her personal journey with the CMTA.  With 20 plus years of raising awareness and funds.  She's a fierce advocate for the CMTA. 
•  Laurel Richardson emphasizes the strength of the CMTA community in overcoming challenges.

Stay connected with us. Follow CMT 4 Me  to keep up with our monthly episodes, where we explore the stories and advancements that are important to our community.

Join Our Conversation: Your experiences and stories are what make our community strong. If you're interested in sharing your journey with CMT, please fill out our interest form. You could be the voice that inspires others in our next episode.

Explore More: For more in-depth conversations and insights, check out CMT 4 Me Raw and Unedited on YouTube. It's a space where we share openly and connect more deeply with our CMT family.

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 [email protected]. 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

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

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 or without CMT!

Follow us on Facebook, Instagram, YouTube, and TikTok to stay connected and get inspired to live boldly with CMT. Listen to more uplifting stories at www.podpage.com/CMT4Me. 📚

Have your own story to share with the CMT community? Call us at 1-941-233-5172. Together, we can raise awareness and build a strong, supportive community! 🤝💪 #CMTAwareness #Inspiration #HazelStrong

 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 [email protected]. 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

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

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 reflects on navigating the ups and downs of his music career while also contending with the progressively limiting effects of CMT.

Despite the physical and emotional challenges CMT brings, Rick maintains his innate optimism, humor, and lifelong passion for drumming. He discusses the initial frustration of workplace discrimination once his symptoms became visible. We also learn how support from his devoted wife Lois and Rick's own determined spirit kept him pushing forward during the toughest times. His advice on finding inner strength and adapting to disability offers inspiration. Overall, Rick exemplifies the positivity  and hope that lives within the CMT community. 

**Tell Us How You Navigate CMT!**

Within the CMT community, every individual's journey is a testament to determination and strength. How do you navigate the ups and downs of CMT? We’d love to hear your strategies! Please dial in at (941) 233-5172 and share your tips, 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.

**Ready to Hear More Inspiring Tales?**

If you found Rick's journey moving or want to share your own story, check out our interest form and stay tuned for more conversations that bring the CMT community together.

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 [email protected]. 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

For more information about CMT and to support the CMTA, please visit www.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. Zuchner
• David Tannanbaum
• Arda Ozdemir
• Camilla Stivinson
• Bev and Frank Wurzel
• Aron Taylor
• Ashley McLeroy
• Dan and John Morgan
• Yohan Bouchard
• Dr. Glenn Pfeiffer

And 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 Me.

Stay 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 #ShareYourStory

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, inte

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

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.

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 [email protected]. 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

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

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 disease
• A 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.

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 [email protected]. 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

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

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.

• Understanding 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.

• Learn more about Arda and his work at Rise 2 Realize
• Check out Arda's books, including "The Art of Becoming Unstuck," available on Amazon
• Read more about Arda's journey and his approach to coaching on his About page

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 [email protected]. 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

For more information about CMT and to support the CMTA, please visit www.cmtausa.org