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.

Living with Muscle Weakness is Not Rare to Me

Feb 18, 2022 | Life with CMT

Krista Allison, living with CMT4J I was born with Charcot-Marie-Tooth disease (CMT) and my symptoms started to appear about 12-months-old when I began to learn to walk. Since the age of 15, I have had roughly 12 foot surgeries to correct foot abnormalities, although I...

Maximiliano Barrientos Joins CMT Research Foundation

Feb 15, 2022 | 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 | Press Releases

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 | Press Releases

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...

Michele and Kent Stahl and Family Give $1,000,000 to the CMT Research Foundation to Develop Treatments for CMT1A

Jan 4, 2022 | Press Releases

Atlanta (January 4, 2021) Michele and Kent Stahl and their family today announce a $1 million donation to support the CMT Research Foundation’s $10 million ENDGAME: the Campaign to End CMT1A. Since the soft launch of ENDGAME in September, families and friends with...

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, 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....

2021 Year in Review

Dec 31, 2021 | Press Releases

2021 has been a banner year for progress in CMT drug development, much of which has been possible because of your partnership with the CMT Research Foundation – thank you! Despite the challenges presented by a global pandemic, we can be proud of all that we were able...

Changing One Family’s Legacy

Sep 17, 2021 | Life with CMT

As with many families, I am but one leaf in a family tree colored by CMT1A across its many limbs and branches. I have watched successive generations struggle with the disease’s progressively debilitating physical symptoms and persistent emotional toll: grandparents,...

The CMT Research Foundation Kicks Off September CMT Action Month

Sep 10, 2021 | Press Releases

Each September we join with other organizations to build awareness for Charcot-Marie-Tooth Disease. As you know, CMT is little-known and poorly understood outside of the patient community and we celebrate each and every effort to educate the medical community, the...

How the CMT Research Foundation Catalyzes Research into CMT

Jul 20, 2021 | CMT Research Updates, CMTRF Funded Research, Life with CMT

An Interview with RareCast's Danny Levine Part of our mission at CMT Research Foundation is to raise awareness about the progress we are making in finding a cure for CMT in the medical, scientific, pharma and patient communities. So, I was pleased to be interviewed on...