According to a story from Charcot-Marie-Tooth News, the Muscular Dystrophy Association (MDA) may at first seem like a group that is solely focused on helping muscular dystrophy patients, but its mission has expanded far beyond that to include a diverse array of rare neuromuscular disorders, such as Pompe disease, amyotrophic lateral sclerosis (ALS), and Charcot-Marie-Tooth disease. The group claims to be the largest funder of neuromuscular disorder research outside of the government.
in 2020 the MDA is expected to dole out $18 million in research grants. Last year, the organization distributed $16.8 million. Aside from its critical role in providing much sought after funding, the association also operates a variety of programs that offer much needed support to those impacted by neuromuscular diseases.
MDA Care Centers
One such program are the MDA Care Centers, a network of 150 clinics across the US that specialize in treating neuromuscular disorders. Each state in the country has at least one. These centers are also used for conducting critical research and many of them have become major clinical trial sites. Click here to find a center that is closest to your area.
MOVR Data Hub
In tandem with the MDA Care Centers is the MOVR Data Hub, which organizes and compiles important data from patients, including information gathered by clinicians and self-reported by the patients themselves. Data for seven diseases is currently being included in the system, but the hub is soon planning to expand so that all 40 disorders covered by the MDA are incorporated. Informed consent is required for participation and patient information is closely guarded.
MDA Summer Camp
Another program geared towards pediatric patients is the MDA Summer Camp program. This week long event is for patients aged 8-17 with programs being held in 34 states. The program offers a much needed time for relaxation, recreation, and community building.
It seems clear that MDA is gearing up for another big year of offering support and services to patients with a wide variety of rare neuromuscular diseases. These disorders are among some of the most challenging rare diseases out there, and the continued support of organizations like MDA can go a long way to making patients’ lives better.
Check out the association website here.