CMT 4 Me

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 disorders. Kelly also has CMT. In this podcast, she covers foot surgery, assistive devices, exercises, nutrition, mental health wellness, and the quest to find a CMT-savvy PT!   Kelly provides a one-stop-shop to health and well-being. If you came with questions, you’ll leave with answers!

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

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, and a negative self-image. How long could she hide the diagnosis? Was her career over? As she lifted her mask of perfection, she discovered strength and humility. Listen to her unbelievable true story of success, loss, and renewal.

Episode Highlights

• Liane’s spirit animal is the rhinoceros. Find out why!
• A core group of friends and family is sacred.
• Just grab a stranger’s arm and ask for help!
• Enjoy the little things in laugh, and don’t forget to laugh.
• Who else hates cans with pull-up tabs?

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

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. Join us for a tip-filled, uplifting podcast addressing braces, acupuncture, stretch therapy, massage, cervical chiropractic work, slow breathing, and so much more. 

• The magical properties of walking sticks. 
• Remembering Tom’s late brother, Michael.
• Jimmy Lee the janitor: Living according to his philosophy and principles.  
• Move it or lose it! 

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

• 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 ease. Consulting with people globally, he continuously goes above and beyond for his patients, setting time aside on weekends and evenings to discuss individual cases.

A perfectionist by nature, Dr. Pfeffer empathizes with your anxiety, fears, and doubts. Having experienced life-limiting foot problems his entire life, he understands pain, immobility, and frustration firsthand. With heartfelt passion, Dr. Pfeffer wants you to know, “Hope remains very much alive for the CMT patient.” Listen to this genuine conversation, then fix what you can before it is too late.

Instagram: @CharcotMarieToothSurgery

Glenn B. Pfeffer, MD - Cedars-Sinai Medical Center Directory

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

• 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 isolation, fear, illness, pain and loss of ability.

With brutal honesty, Bethany describes her descent into despair, where the darkness threatened to swallow her whole. Ultimately, adversity never did stand a chance, as her strength and resiliency shone forth, providing fertile ground for profound growth and insight.

Today, she takes us for a ride of a lifetime, where joy, possibility, and dreams are still mightily present.

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

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 using conversation, thought-provoking questions, breathwork, and meditation.

Abby explains how your mindset and belief system affect everything in life, from what you think and feel to how you react to the external world. Learn, listen and share these empowering tools with your children, so they too will be able to move beyond personal limits with conscious decision-making and insight.

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

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

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 easy-to-understand explanations of a wide range of CMT topics.

Kenny makes it his business to advocate for people with CMT every single day. Kenny spends free time sharing his knowledge and enlightening the non-initiate in tangible and meaningful ways. An autodidact at heart, Kenny learned all he could about his own CMT to help others understand the intricacies of a CMT diagnosis while busting myths and disarming misinformation. He’s a gift to the CMTA and an invaluable resource for the CMTA community.

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

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

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 blog, Beauty in the Pain. Even with her chronic illness and limitations, Katerina continues to serve others through seated dance, sharing her CMT story and encouraging others to live the best life possible, despite constraints.

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

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=M2DNzRdBAPs

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

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

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 increasing number of pharma partners, the CMTA is changing the world at an accelerated pace. Listen and learn how our CMT patient community has inspired, motivated, and influenced the growth of the CMTA and its mission - to support the development of new drugs to treat CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure. Our vision … a world without CMT.

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

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