Two Charcot-Marie-Tooth (CMT) patients, Patrick Livney and Susan Ruediger, have launched the CMT Research Foundation (CMTRF), a nonprofit group committed to developing treatments and cures for the disease.
The Atlanta-based CMTRF will rely on the two patients’ personal experience, professional knowledge and partnerships to achieve its goals.
Livney, a former chairman of the CMT Association (CMTA), and Ruediger, CMTA’s former development director, have been working together for over 20 years — along with CMT researchers, biotechnology professionals and the pharmaceutical industry — to develop new 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 amyotrophic lateral sclerosis (ALS) and Alzheimer’s,” Livney said in a press release.
“Our bold strategy of funding CMT drug delivery is driven by a passion to help patients across the country, many who have more severe cases of the disease than we do. We are committed to stretching every dollar to deliver faster results,” Livney added.
Livney, an entrepreneur, has CMT type 2 and has been volunteering on behalf of families living with CMT for years.
Ruediger was diagnosed with CMT1A when she was 18 months old. After the birth of her first child, she started a local support group to gather more information and resources for CMT. Since 2007, Ruediger has been engaged with the patient and research communities.
The CMTRF will fund the most promising and effective research focused on medication delivery by establishing strategic alliances with academic and industrial partners.
“Research is what it takes to develop effective treatments and ultimately a cure for CMT and the only thing standing in the way of that research is funding,” Ruediger said. “As a patient living with CMT every day, I know firsthand how urgent it is that we eliminate this devastating condition and I won’t stop until there is a cure.”