VP Public Relations and Community Programs
Muscular Dystrophy Association
CHICAGO, July 12, 2016 – The Muscular Dystrophy Association (MDA) and the Charcot-Marie-Tooth Association (CMTA) today announced a partnership aimed at advancing Charcot-Marie-Tooth disease (CMT) research, therapy development and clinical care. The partnership also aims to increase awareness and understanding about the disease by improving education for kids and adults affected by CMT, medical professionals and the public. The partnership represents a key step in MDA’s commitment to form strategic alliances with for- and non-profit organizations. CMT is one of the neuromuscular diseases MDA fights as an umbrella organization with a big picture perspective on finding treatments and cures for kids and adults whose weakening physical strength and loss of mobility make the most basic daily activities extraordinarily challenging.
“MDA is strategic in pursuing collaborative partnerships and motivated in our efforts to align and work together with other organizations toward common goals,” said MDA President and CEO Steven M. Derks. “When we partner to share knowledge and resources with respected and capable organizations like the CMTA, we can make a greater impact — one that will make a difference in the lives of individuals and families with CMT. We are committed to freeing people from the harmful effects of neuromuscular disease, and we know that our goal is most easily accomplished if we unite with others and work together.”CMT is one of the most common inherited neurological disorders, affecting approximately one in 2,500 people in the United States. It comprises a group of disorders caused by mutations in genes that affect the normal function of peripheral nerves. Onset of symptoms most often occurs in adolescence or early adulthood, though the disease can also present in later years. Degeneration of motor nerves results in muscle weakness and atrophy in the arms, legs, hands or feet, and the degeneration of sensory nerves results in a reduced ability to feel heat, cold and pain. There are many forms of CMT, and the severity of symptoms varies widely among individuals. There is no cure for CMT, but physical therapy, occupational therapy, braces and other orthopedic devices and orthopedic surgery can help people cope with the disabling symptoms of the disease.
“The CMTA’s STAR (Strategy to Accelerate Research) platform has been working tirelessly to fund translational projects on the pathway to finding a treatment for various types of CMT,” said the CEO of the CMTA. “This partnership will work to enhance that effort, maximize resources and hopefully put us on a faster track toward the ultimate goal of a cure.”
Partnership goals include working to accelerate the search for new therapies and treatments for CMT, improving communication among all stakeholders in the field and increasing collaboration among research and clinical investigators. With the launch of this partnership, MDA and CMTA plan to co-fund research and training grants, collaborate on infrastructure initiatives, coordinate advocacy efforts at the national, state and local levels and work together on communication outreach to CMT families.
MDA is leading the fight to free individuals—and the families who love them—from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help kids and adults live longer and grow stronger by finding research breakthroughs across diseases, caring for individuals from day one and empowering families with services and support in hometowns across America.
Learn how you can fund cures, find care and champion the cause at mda.org.
The Charcot-Marie-Tooth Association (CMTA) is a registered 501c3 dedicated to serving an international patient community that suffers from rare and disabling neuropathies of genetic origin (https://www.cmtausa.org). The CMTA directly engages its STAR scientific and clinical research network in the identification, validation and clinical development of therapies for the different Charcot-Marie-Tooth disorders.