CMT 4 Me Chris and Elizabeth Ouellette

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 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



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.


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 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

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 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 page


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

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 community: Victoria emphasizes the importance of having a supportive community while living with a progressive disease like CMT. She shares her experiences with the CMT community and her advocacy work, which have helped her find support and strength.
- Advocacy work: Victoria is a passionate advocate for people with disabilities, and her work has made a significant impact in the CMT community. She has been actively involved in advocacy work and has raised her hand to be a CMTA branch leader in Edmonton, Canada. She encourages others to get involved in advocacy work as well.
- “Push”-ing boundaries Victoria talks about her experience on the docu-series "Push," available on the GEM Network in Canada, which takes you inside and intimately with a very special disabled group in Edmonton, coined the “Wheelie Peeps.” The show follows people with disabilities as they navigate life through good times and bad. Victoria shares how the show has helped her push boundaries and break stereotypes, and how she found support through acceptance, knowledge, and one big ambition - to live life to the fullest.
Don't miss this inspiring conversation with Victoria Berezovich! Listen to the full episode of the CMT 4 Me podcast to learn more about her experiences and advocacy work. And if you want to get involved in the CMT community, consider participating in the Cycle 4 CMT event or other advocacy work. Together, we can make a difference!


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

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 individual, which may require some experimentation, but the effort is worth it in the end.

Jeff also shares his deeply personal journey of coping with loss after losing his young son Ethan while trying to save their lives while swimming in the powerful currents of Lake Michigan. He talks about how he and his family have been coping with grief and how it has affected his life with CMT.

Despite the challenges he faced when his son Ethan was born with special needs, including surgeries, hospitalizations, breathing and swallowing problems, hearing loss, and a difficult social environment, Ethan thrived and taught Jeff to take things as they come. Later, Jeff and his family adopted Penelope from China, and Jeff learned that true happiness comes from putting others first and living in the moment.

Jeff's journey of resilience and positivity is chronicled in his book, "The Fun Master," where he shares valuable insights and lessons he learned through his experiences.
Jeff's story is a reminder that even in the darkest of times, there is light at the end of the tunnel. With a positive attitude, determination, and the support of loved ones, anyone can overcome any obstacle.

Jeff Seitzer is a finalist in the 2022 Best Book Award and is serving as a distinguished reader in the Do the Write Thing Challenge in Chicago, a program that encourages kids to write essays about how violence affects their lives. Winners of the challenge will travel to DC to speak with leaders about reducing violence that affects their futures.

You can learn more about Jeff and his work by visiting his website at jeffreyseitzer.com. His book, "The Fun Master," is available at major online retailers such as Amazon, Barnes and Noble, and Target, as well as local bookstores.

Don't forget to follow the CMT 4 Me Podcast for more inspiring stories like Jeff's and to stay up to date on the latest developments in the CMT community. You can follow us on Instagram @CMT4Me and on Facebook at https://www.facebook.com/profile.php?id=100087317297516.

Please leave us a positive review on your favorite podcast platform, as this really helps spread awareness about CMT.

For more information about CMT and to support the CMTA, visit their website at www.cmtausa.org. You can also join the CMTA Emotional Support group at https://www.cmtausa.org/emotional-support-group/, read Liz O's Blog at https://bestfoot4wardblog.com/tag/elizabeth-ouellette/, donate to the CMTA at https://www.cmtausa.org/ways-to-give/imagine-whats-next/, and check out Camp Footprint if you have children with CMT at https://www.cmtausa.org/get-involved/camp-footprint/.

CMT 4 Me is hosted by Chris Ouellette and Elizabeth Ouellette, produced by iRonick Media
For more information about CMT and to support the CMTA, please visit www.cmtausa.org