Brenda Song, MD, is a neurologist who directs the UMass Duchenne Muscular Dystrophy Program, and she is a pioneer in organizing multidisciplinary care for Duchenne populations. She shares guidance on how families can connect with experienced specialists and care centers.
Transcript
For families who are interested in finding a DMD specialist, one valuable resource is the Muscular Dystrophy Association (MDA). The MDA has multiple clinics across the country dedicated to the care of patients with neuromuscular disorders, including Duchenne muscular dystrophy (DMD).
Another option is to look into family support groups such as Parent Project Muscular Dystrophy (PPMD) and Cure Duchenne. These organizations have certified clinics around the country and maintain strong connections with many care centers. The patient advocacy groups behind these efforts are also well acquainted with the best clinics and specialists.
Lastly, many families — especially when their sons with Duchenne muscular dystrophy have needs that aren’t fully met by local clinics — turn to social media. There are online DMD groups where families share experiences and recommendations about healthcare providers. These peer insights can be incredibly helpful in identifying trusted specialists.
Many families have told me they’ve found us through the internet. These days, it’s much easier to connect with the right care through online searches and social media support networks.
