welcome!
The UMass Chan Wellstone Center for Facioscapulohumeral Muscular Dystrophy (FSHD) is committed to providing personalized care for individuals with FSHD while also helping to accelerate the validation of future FSHD treatments. Our clinical team consists of neurologists, physical therapists, clinical study coordinators, and support staff available to help answer your questions and facilitate your being evaluated in our FSHD clinic. In addition, to advance new therapies for FSHD, we participate in various active clinical trials.
What is (fSHD)?
Facioscapulohumeral muscular dystrophy is an inherited disease causing muscle degeneration and weakness. It typically starts in the face and upper body but can spread to any muscle. Patients with the FSHD gene may develop symptoms during adolescence or between 20 to 30 years of age.
There is not a cure for FSHD, yet clinical treatment is available with physical therapy and orthotic devices.
Interdisciplinary clinic
Our clinic provides high-quality patient-centric care in treating FSHD.
Our team also collaborates with other specialists and experts through consultation services for areas such as genetic testing, nutrition screening and rehabilitation therapies.
Research
Our access to clinical trials allows patients to participate in trials with varying levels of involvement.
To learn more about our active clinical trials and studies, contact Catherine Douthwright, PhD, CCRP, for more information. Catherine.Douthwright@umassmed.edu Phone: (774) 441-7696 Fax: (508) 856-4485
Research REsources
- Available FSHD Clinical Trials | FSHD Society
- Facioscapulohumeral Muscular Dystrophy Clinical Trial Research Network (kumc.edu)The FSHD CTRN is an expanding consortium of academic research centers with expertise in FSHD clinical research or in conducting neuromuscular clinical trials.
- Neuromuscular Study Group As a member of the Neuromuscular Study Group (NMSG), a consortium of scientific investigators from academic and research centers, our patients have access to the cooperative planning, implementation, analysis, and reporting of controlled clinical trials and other research for neuromuscular diseases.