Supporting DMD Across the Nation
We are thrilled to be a part of the Duchenne Program at Umass Chan Medical School in Boston, MA. Not only is our son a patient there, but we have pledged, as a non-profit, to financially support the Duchenne Program over the next 5 years.
"The Duchenne Program at UMass Chan Medical School is a clinical and research site devoted exclusively to extending and enhancing the lives of people with Duchenne muscular dystrophy. Our mission is to deliver the best care possible to the Duchenne community while urgently advancing research for improved outcomes and new therapies.
The Duchenne Program care model is to provide an integrated approach that combines the many disciplines involved in treating patients with Duchenne muscular dystrophy into one seamless patient experience. Our team of experts works together under Dr. Wong’s leadership to provide personalized care that considers the context of Duchenne muscular dystrophy and the individual patient’s circumstances. We start our work with patients and families before they arrive at the clinic’s doorstep and stay involved after the visit is complete. Before patients arrive at the clinic, we provide a customized schedule of tests and appointments and help coordinate insurance coverage. After, we manage follow ups and coordinate care by other medical professionals as needed. We are a full-service program treating patients with Duchenne muscular dystrophy from infants to adults as well as female carriers.
A core team of neuromuscular providers attends to the major systemic problems associated with Duchenne muscular dystrophy. They include attending physicians from:
Cardiology
Pulmonology
Endocrinology
Orthopedics
We also refer patients to our colleagues for renal or gastrointestinal issues. Physical therapy, occupational therapy, nutrition, and customized wheelchair fittings are also integrated into our care model. We have a strong partnership with a neuropsychology team to ensure we meet the needs of the whole patient." - Umassmed.edu (Duchenne Program Website)