About Us

The Charcot-Marie-Tooth Association is the largest philanthropic funder of Charcot-Marie-Tooth disease (CMT) research globally. At the heart of our funding initiatives lies CMTA’s Strategy to Accelerate Research (STAR), bringing the best CMT researchers, clinicians, and experts in therapy development together with pharmaceutical and biotechnology companies and patients to expedite the development of treatments and ultimately a cure for CMT.

CMTA actively works to improve the quality of life for all CMT-affected families. Our comprehensive community first approach includes educational programs and materials, community and professional conferences, a community-led support network through our extensive Branch system in North America, and much more.
Founded by community members and still driven by a dedicated CMT community, CMTA traces its origins to the National Foundation for Peroneal Muscular Atrophy (NFPMA), established in 1983 in Pennsylvania. Original founding member, Dr. Howard Shapiro, himself diagnosed with CMT, envisioned creating awareness within the medical community and providing support to families grappling with this lesser-known rare disease. As a federally recognized 501(c)(3) charity, the former NFPMA, now CMTA, has tirelessly pursued Dr. Shapiro’s dual mission—advancing research for CMT causes, treatments, and cures, and empowering community through education and support.

Join us in making a difference in the lives of those who are affected by CMT.

Leading us in our mission is the governing CMTA Board of Directors and a STAR Advisory Board comprised of the world’s foremost CMT research scientists, clinicians and experts in the field of developing pharmacological therapeutics.

To learn more about CMTA and to get involved, visit cmtausa.org.

What People Have to Say

Some kind words about our Summit

“Helpful!”

Thank you CMTA for the annual Patient & Family Conferences! It’s wonderful to be able to learn about CMT directly from top experts in the field and to be able to ask them questions. I especially appreciated the 2021 Conference as it was virtual, allowing participants to move around easily from topic to topic from the comfort of home. For those who couldn’t attend, the videos were later posted on CMTA’s website, which is a very helpful resource. Thank you very much!

Angela Graham
Founder, CMTUS on Facebook

“Incredible!”

Last year’s November 2021’s virtual CMTA Patient/Family conference provided incredible multidisciplinary content. The platform’s versatility, speaker’s expertise, and friendly CMTA staff moderators were all extremely impressive and effective. I especially appreciated the ability to watch webinars/talks on demand, following the conference, since the conference began very early for people on the west coast. Additionally, I relished the ability to rewatch a presentation with difficult subject matter or just to solidify the information.

Lisa Weiner
CMTA Community Member

“Wonderful!”

The CMTA Patient/Family Conference which was virtual in 2021 was a wonderful experience to be involved in. Having CMT1a I appreciated the variety of topics and speakers and also for the networking it afforded you as a conference goer.  I look forward to seeing what is offered in 2022 and beyond.

Maryann Ciskal
Buffalo, NY Branch Co-leader

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