The CMT Research Foundation, a non-profit focused solely on delivering treatments and cures for Charcot-Marie-Tooth disease announced over the weekend at its annual Global CMT Research Convention that it has surpassed its goal of raising $10 million to fund research to find treatments and cures for CMT Type 1A.
Peter J. de Silva, CMTRF Board Chair, CMT patient, and Chair of the ENDGAME Capital Campaign launched the campaign three years ago saying, “For the first time in more than 45 years, I am encouraged that the science is at a point where treatments and cures are soon to be a reality. We are closer than ever to finding treatments and cures. I can’t wait for that day. Because we believe that the end of CMT1A is in sight, CMTRF calls the campaign ENDGAME. Moreover, CMTRF is confident that successes achieved by the research underwritten by ENDGAME will eventually benefit all types of CMT.”
“The Foundation has put the money raised to immediate work for drug development for CMT1A. To date funds have fueled 9 projects from six companies and three top academic research centers aimed at developing or advancing therapies and cures for CMT1A,” says Cleary Simpson CEO of CMTRF. “Three of the companies have drugs that they are preparing for clinical trials: Oryzon Genomics, Augustine Therapeutics, and Armatus Bio. Another three companies hadn’t worked in CMT before; ENDGAME activated their technologies to be applied to CMT1A.”
“I, along with many other generations of other family members, have lived with this disease since our respective childhoods,” says Susan Ruediger, Co-Chair of ENDGAME and CMTRF’s Chief Mission Officer. “It just has to stop, and we are now in a position to make that happen.”