New ‘CMT 4 Me’ Podcast Gives Voice to Patients, Raises Awareness

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A new podcast called “CMT 4 Me,” launched by the patient-led Charcot-Marie-Tooth Association, aims to give a voice to people living with Charcot-Marie-Tooth disease (CMT), and to raise awareness of the rare disorder.

Its creators hope the format will provide a new outlet for patients and supporters who may be suffering from “screen fatigue” as a result of the global COVID-19 pandemic.

CMT 4 Me is “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,” according to a press release from the nonprofit announcing the new podcast.

Topics of discussion will include new research and fundraising efforts related to CMT, as well as stories and interviews with members of the association’s community — including board members, branch leaders, and team members.

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Podcasts are “a great way to create more engagement and awareness around CMT,” said Elizabeth Ouellette, one of the hosts of CMT 4 Me.

“With screen fatigue on the rise, audio recordings are a convenient way to reach people all over the world, offering the freedom to listen while multi-tasking,” said Ouellette, whose 28-year-old son, Yohan Bouchard, is featured in the first podcast.

Titled “The Epic Battle Between Samurai and CMT,” that 37-minute episode aired on Sept. 14 and told the story of Bouchard, who was diagnosed with CTM type 1A when he was 7 years old.

“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,” the podcast’s show notes read.

Additional episodes are set to air every three weeks; the next three will air on Oct. 7, Oct. 28, and Nov. 18.

Episodes of CMT 4 Me are available online here, and on common podcast apps such as Spotify and Apple Podcast.

The podcast aims to offer people with CMT a platform to give voice to the challenges they face, and to share strategies for persevering and overcoming those hurdles. The show also hopes to spread awareness of this rare disease, which affects about one in 2,500 people.

Ouellette is co-hosting the new podcast alongside her brother, Chris Ouellette, both members of the CMT Association Board of Directors. The brother-and-sister duo are the founders of the Vermont Cycle (and Walk!) 4 CMT. In its eight-year history, this fundraising event has raised $1.7 million in support of the Strategy to Accelerate Research (STAR), a program launched by the CMT Association to help speed the pace of CMT research, with the ultimate aim of developing treatments.

Chris Ouellette said that he has 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,” he said.