Charcot-Marie-Tooth Experts Launch Organization to Fund Treatments and Cures

Two experts in Charcot-Marie-Tooth (CMT), who also have the condition, recently launched the CMT Research Foundation (CMTRF) as the only 501(c)(3) not-for-profit organization focused solely on delivering treatments and cures for CMT.

Patrick Livney, a former chairman of CMTA, and Susan Ruediger, a former CMTA development director, have more than 20 years of collective experience working with CMT researchers to deliver treatments. By developing partnerships with researchers, pharmaceutical and biotechnology professionals, as well as a national network of CMT patients, they have been instrumental in achieving recent, successful milestones in CMT research.

CMT is a progressive genetic nerve disease and can lead to severe disability or even death. CMT has more than 90 known genetic causes and can be passed down in multiple generations. Onset can be at birth or later in life and is characterized by loss of muscles and sensation in the feet, hands, legs, and arms. Nearly three million people of every age, race, and ethnicity are living with CMT. Currently there is no cure for CMT; and there are not any effective treatments.

“The CMT Research Foundation will play a unique role in the CMT community by limiting overhead and focusing on funding research that will help speed cures not only for various levels of CMT, but also other neurological degenerative diseases including ALS and Alzheimer’s,” Livney said.

The CMTRF will support promising and effective research aimed at drug delivery by developing strategic alliances with academic and industry stakeholders. With the help of an advisory board comprised of academic, medical, and biotech experts, the CMTRF will fund translational research for all types of CMT.

(Source: CMT Research Foundation)