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.

Dr. Riann Egusquiza Joins The CMT Research Foundation as Director of Research

Apr 8, 2024 | About CMT, Press Releases

Riann Egusquiza (ryan egg-uh-ski-tha) PhD has joined The CMT Research Foundation as Director of Research, a newly created position. She will report to Cleary Simpson, CMTRF’s CEO, and be responsible for overseeing all CMTRF-funded research and scientific programming...

CMT Research Foundation Partners with Jenny Decker, CMT Patient Attempting to Solo-Circumnavigate Globe to Raise Awareness of Charcot-Marie-Tooth Disease

Apr 2, 2024 | Press Releases

The CMT Research Foundation (CMTRF) a non-profit focused solely on delivering treatments and cures for Charcot-Marie-Tooth disease (CMT)*, has partnered with Jenny Decker, a 40-year-old nurse battling CMT, a rare neurological disease with no known cure, who last...

Cisco’s Santo Caivano Joins CMT Research Foundation Board of Directors

Jan 16, 2024 | Press Releases

CMT Research Foundation (CMTRF), a patient-led, non-profit focused on delivering treatments and cures for Charcot-Marie-Tooth (CMT) disease, today announced that Santo Caivano, Director, Customer Engagements of Cisco’s CAP (Critical Accounts Program) Americas team,...

Kayleena Speakman Joins The CMT Research Foundation as Communications Manager

Jan 4, 2024 | News, Press Releases

Kayleena Speakman has joined The CMT Research Foundation, a patient-led, non-profit focused on delivering treatments and cures for CMT as Communications Manager responsible for emails, blogs, social media posts and opinion pieces for the CMT community, donors,...

The Importance of Fundraising

Nov 14, 2023 | About CMT, Life with CMT

By: Miron Hall Because CMT is a rare disease, it often receives less attention and funding than more common medical conditions. Without adequate resources, researchers struggle to develop effective treatments and ultimately find a cure. This is where fundraising plays...

Dr. Grace Pavlath Joins CMT Research Foundation’s Research Advisory Committee

Nov 14, 2023 | Press Releases

ATLANTA (November 14, 2023) The CMT Research Foundation (CMTRF), a patient-led, non-profit focused on delivering treatments and cures for Charcot-Marie-Tooth (CMT) disease*, today announced that Dr. Grace Pavlath has joined its newly formed Research Advisory Committee...

CMT Research Foundation Launches Research Advisory Committee of Renowned Scientific Experts

Oct 18, 2023 | Press Releases, Research News

ATLANTA (October 18, 2023) The CMT Research Foundation (CMTRF), a patient-led, non-profit focused on delivering treatments and cures for Charcot-Marie-Tooth (CMT) disease*, today announced the formation of a Research Advisory Committee (RAC) consisting of: Dr. William...

Arthur Suckow, former Co-founder and Chief Executive Officer of DTx Pharma, Joins CMT Research Foundation Board of Directors

Oct 3, 2023 | News, Press Releases

ATLANTA (October 3, 2023) CMT Research Foundation (CMTRF), a patient-led, non-profit focused on delivering treatments and cures for Charcot-Marie-Tooth (CMT) disease*, today announced that Arthur Suckow, Ph.D. former Co-founder and Chief Executive Officer of DTx...

Another Asset with Potential to Treat Charcot-Marie-Tooth has been Acquired by Pharma

Sep 26, 2023 | News, Press Releases

An asset that is being tested in CMT4B1 underwritten by the CMT Research Foundation has been licensed by AcuraStem to Takeda for approximately $580 million. The exclusive, worldwide license will enable Takeda to develop and commercialize AcuraStem's PIKFYVE targeted...

The CMT Research Foundation Launches Annual CMT Action Month with Special September of Events

Sep 1, 2023 | Press Releases

To mark CMT Action Month this September, the CMT Research Foundation (CMTRF) today launched a month-long lineup of events, bringing together artists, advocates, and the CMT community from across the U.S. The series of events aim to raise awareness and critical funds...