GLENOLDEN, PA — The Charcot-Marie-Tooth Association announced the launch of CMT 4 Me, an emotional, heartfelt and humorous podcast for the 3 million people who live with the degenerative neuromuscular disease and the millions more who support them.
CMT is a progressive disorder of the peripheral nerves that causes people to lose the normal use of their feet and legs. Symptoms include: foot deformity (very high arched feet) and foot drop (inability to hold foot horizontal); a slapping gait (feet slap on the floor when walking because of foot drop); loss of muscle in the lower legs, leading to skinny calves; numbness in the feet; and difficulty with balance. Hands and arms may also be affected.
The CMTA is a patient-led nonprofit whose mission is to cure this incurable disease. It does so with an aggressive, multipronged attack on the disease, bringing together a group of top-flight researchers and experts and directly funding their work. CMTA launched the Strategy to Accelerate Research, or STAR, in 2008 to capitalize on breakthroughs in genetics and dramatically speed up the pace of CMT research. Since then, STAR has made great strides toward developing treatments for CMT.
Equally as important, the CMTA provides a wide-ranging array of services for the patient community, with everything from local support groups to educational resources to publications to the country’s only summer camp for kids with CMT.
CMT 4 Me adds to the CMTA’s already extensive menu of patient services by providing a platform where people with CMT can give voice to their challenges—and share ways to overcome them. The podcast is also intended to spread awareness of this “rare” disease, which affects one person in 2,500. Topics will include research updates, fundraising, unique stories and interviews with members of the CMTA community, including board members, branch leaders and CMTA team members.
Episodes started September 14 with the first titled “The Epic Battle Between Samurai and CMT,” featuring Yohan Bouchard, a 28-year-old with CTM1A. Episodes, which can be found at cmt4me.buzzsprout.com will air every three weeks thereafter, with podcasts scheduled for October 7 and 28, and November 18.
Podcast co-hosts Chris and Elizabeth Ouellette are the founders of the Vermont Cycle (and Walk!) 4 CMT, which has raised $1.7 million for STAR research over its eight-year history. They are also on the CMTA Board of Directors. Elizabeth pointed out that the audio format makes podcasts “a great way to create more engagement and awareness around CMT. “With screen fatigue on the rise,” she said, “audio recordings are a convenient way to reach people all over the world, offering the freedom to listen while multi-tasking.
Chris said he’s been “thoroughly inspired by the spirit, determination and tenacity of our guests. The CMT narratives you hear on this podcast will touch you profoundly, giving you reasons to move beyond limitations, taking you to the next level of your personal journey.”
Anyone with tips or ideas for the podcast is invited to share them at [email protected].
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