Patient Resources

The UMass Chan Wellstone Center for 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 a variety of active clinical trials.

For questions or scheduling an appointment with Lawrence Hayward, MD, or other neuromuscular specialists in the FSHD Clinic:

Jennifer Gomez
UMass-Memorial Neurology Clinic
55 Lake Avenue North
Worcester, MA 01655
Phone: (508) 334-8171 Fax: (774) 442-3687
Jennifer.Gomez@umassmemorial.org

Neurology Clinic Scheduling: (508) 334-2527

Lawrence J. Hayward, MD, PhD
     Clinic hours:  1st and 3rd Thursdays 8:00 am – noon 

Make An Appointment
Phone: (855) UMASS-MD

For information regarding participation or scheduling in FSHD Clinical Trials:

Catherine Douthwright, PhD, CCRP
Neuromuscular Research Coordinator

UMass Chan Neurology Dept, Rm S5-750B
55 Lake Avenue North
Worcester, MA 01655

Phone: (774) 441-7696 Fax: (508) 856-4485
Catherine.Douthwright@umassmed.edu

FSHD Clinical Trials

A list of ongoing and completed FSHD Clinical Trials can be found here: [link] 

The FSHD Clinical Trial Research Network (CTRN) can be found here:  [link]
The FSHD CTRN is an expanding consortium of academic research centers with expertise in FSHD clinical research or in conducting neuromuscular clinical trials.

We are a member of the global  Neuromuscular Study Group (NMSG):  [link]
The Neuromuscular Study Group (NMSG) is a consortium of scientific investigators from academic and research centers who are committed to the cooperative planning, implementation, analysis and reporting of controlled clinical trials and of other research for muscle and other neuromuscular diseases.