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.
There is No Guidebook on How to Parent a Child with CMT
By Thomas Sander When our daughter, Lily, was four-years-old she was unusually clumsy, something we initially wrote off as developmentally appropriate. Soon, however, her feet turned in dramatically, leaving her mobility severely restricted. My wife and I spent an...
Taking on the Yorkshire Three Peaks Challenge for Charcot-Marie-Tooth (CMT)
Two women in the UK, Lucy Brown and Chrysi Albustin, will be tackling the Yorkshire Three Peaks Challenge to raise awareness and funds for Charcot-Marie-Tooth (CMT). Lucy’s mother was diagnosed with CMT1A in 2002; before Lucy was born. CMT is a progressive,...
Mother and Three Sons, All Diagnosed with CMT2N within a Year
Just one year ago, Tara’s oldest son, Luca, started coming home from school crying in pain. He would rush to take off his shoes and socks, saying that his feet were “buzzing”. At five years old, Luca’s foot had high arches and a deformity, causing his bones to...
Thomas F. Sander Joins CMT Research Foundation Board of Directors
ATLANTA (April 26, 2023) CMT Research Foundation (CMTRF), a patient-led, non-profit focused on delivering treatments and cures for Charcot-Marie-Tooth disease, today announced that rare disease sales specialist, Thomas F. Sander, has joined its Board of Directors....
Edritz Javelosa to Join the CMT Research Foundation as Chief Scientific Officer
ATLANTA (April 17, 2023) Edritz Javelosa (Hav-a-low-sa), PhD, who has been at the Muscular Dystrophy Association (MDA) since 2019 and Research Portfolio Director since 2021, has joined the CMT Research Foundation (CMTRF) as Chief Scientific Officer. Reporting to...
The CMT Research Foundation Appoints Anna Combes Vice President of Philanthropy
ATLANTA (April 10, 2023) Anna Combes has joined the CMT Research Foundation in the newly-created position of Vice President of Philanthropy. Reporting to the Chief Operating Officer, Ms. Combes will be responsible for fundraising and development activities, including...
The CMT Research Foundation (CMTRF) Joins the European CMT Federation (ECMTF)
The CMTRF is happy to announce that they are joining the ECMTF, a non-profit organization grouping European and worldwide national associations supporting people affected by the Charcot-Marie-Tooth (CMT) disease or neuromuscular disorders. One of the primary goals of...
Peter de Silva, Board Member of the CMT Research Foundation and Former Retail President of TD Ameritrade, Publishes Taking Stock
Taking Stock engagingly toggles back and forth between de Silva’s highly successful business career and his quiet battle with CMT ATLANTA (March 23, 2023) Peter de Silva, a nationally recognized and highly accomplished financial industry executive whose career...
A Rare Disease Throughout Time
More than 3 million people around the world have Charcot-Marie-Tooth (CMT) disease, but even with its quirky name, CMT is still relatively unknown. A progressive, degenerative disease involving the peripheral nerves that branch out from the brain and spinal cord to...
CMT Research Foundation and Nanite Inc. Announce Partnership to Enhance Therapeutic Efficacy of Antisense Oligonucleotides in CMT1A
ATLANTA, GA (February 22, 2023) The CMT Research Foundation (CMTRF), a non-profit focused solely on delivering treatments and cures for Charcot-Marie-Tooth (CMT) disease*, today announced a partnership with Nanite, Inc., a Boston-based biotechnology company developing...