News & Stories

See the latest news about CMT drug development and read stories from the CMT community that highlight why we must deliver treatments and cures during our lifetime.

Legacy – an Anthem for Patients with CMT

May 13, 2022 | Life with CMT, News

Recording-artist/songwriter/producer Dina Fanai AKA AVALONA, released Legacy today across all platforms Legacy was written as an anthem for patients with Charcot-Marie-Tooth disease (CMT), one of the world’s most common inherited neurological diseases. CMT causes...

Shift Pharmaceuticals Completes CMT Research Foundation-Funded Project, Will Continue Development of Gene Therapy for CMT1A

May 4, 2022 | CMT Research Updates, CMTRF Funded Research, News, Press Releases, Research News

The CMT Research Foundation is pleased to announce that Shift Pharmaceuticals (Shift) has successfully completed their CMT Research Foundation-funded RNA-based therapy project. Shift created and tested a library of novel molecules designed to reduce the expression of...

Family Affected by CMT1A Makes a Cure Their ‘Endgame’

Apr 18, 2022 | About CMT, Life with CMT

Published by CMT News (slightly edited for clarity) It was an unexpected $1 million gift even for Kent and Michele Stahl. The Charcot-Marie-Tooth Research Foundation (CMTRF) was hosting a research convention in September when it announced Endgame, the organization’s...

Five Reasons Why We Think the End of CMT is in Sight

Apr 11, 2022 | About CMT, CMT Research Updates

Nearly every instance of CMT is caused by the mutation of a single gene and most genetic causes of CMT have been identified. The era of genetic medicine has already begun. The FDA first approved genetic medicines in 2016/2017. This set the foundation for a precision...

The Power of Scientific Collaboration – New Biomarkers for CMT

Mar 22, 2022 | About CMT, News, Research News

At the CMT Research Foundation, we believe that more is achieved when people work together than when they work individually. This is especially true in biomedical research. Over the past few decades, a seismic shift has occurred in science with cooperation becoming...

CMTRF Research Efforts to Benefit from a Portion of Ticket Sales from Alan Jackson’s Last Call: One More for the Road Tour

Mar 11, 2022 | News, Press Releases

ATLANTA (March 11, 2022) CMT Research Foundation (CMTRF) the only nonprofit organization focused solely on delivering treatments and cures for Charcot-Marie-Tooth disease (CMT)*, will see its efforts boosted by country music superstar Alan Jackson's fans this year as...

Maximiliano Barrientos Joins CMT Research Foundation

Feb 15, 2022 | News, Press Releases

The CMT Research Foundation (CMTRF), a non-profit focused solely on delivering treatments and cures for Charcot-Marie-Tooth disease* is pleased to announce that Maximiliano Barrientos has joined its Board of Directors. Mr. Barrientos is a Co-founder, Investor and CFO...

Welcoming New Expert Advisors

Jan 25, 2022 | News

By Keith Fargo, Chief Scientific Officer The CMT Research Foundation’s Scientific Advisory Board is composed of distinguished scientists and clinicians who provide independent expert perspectives as key volunteers. Their contributions take several forms. Most visibly,...

CMT Research Foundation Elects Board Member Cleary Simpson to Chief Executive Officer

Jan 10, 2022 | News

By Patrick Livney, Board Chair and Co Founder As we move from being a startup to the leading foundation seeking to cure CMT, we can look back with great pride on our progress to date: We have raised almost $10 million in three years, funded 12 projects (with two in...

Why Michele and Kent Stahl and their family made a $1,000,000 gift to CMT Research Foundation to develop treatments for CMT1A

Jan 4, 2022 | Life with CMT, News, Press Releases

Michele and Kent’s son, Austin, was diagnosed with CMT1A when he was 16 years old. Having difficulty with his balance and walking, it took years for him and his family to understand the cause. His mother Michele recounts, “we spent seven years searching for an answer....