Donate Tissue

Tissue donated by FSHD patients is essential for new discoveries that can lead to treatments, and, eventually, to a cure. Please consider the valuable gift to research of tissue donation obtained during certain types of surgery (such as scapular fixation) or at death. The key to a successful donation is to register now to the FSHD Tissue Donation Registry, just the way you might register as an organ donor when you renew your driver’s license. Please contact us if you have any questions about making a tissue donation.

Patients can also donate biopsies (small tissue samples collected through minor surgery or a hollow needle) in the context of a research study. For more information, visit our Volunteer for a Clinical Study page.

FSHD Tissue Donation Registry

The FSH Society has partnered with the National Disease Research Interchange (NDRI) to establish a U.S.-wide registry of individuals with FSHD and their family members who wish to donate tissue obtained during surgery or post-mortem. The registry obtains informed consent from donors and arranges to recover donated tissue and distribute it to qualified researchers. Download a brochure about the registry HERE. To register, please contact NDRI at 800-222-6374. Be sure to mention that you wish to sign up to the “FSHD registry” when you call.

Visit our FAQ page about the FSHD tissue donation registry.

NICHD Brain and Tissue Bank

The National Institutes of Health (NIH) National Institute of Child Health and Human Development (NIH NICHD) Brain and Tissue Bank for Developmental Disorders at the University of Maryland in Baltimore is a tissue resource center established by the NIH NICHD to further research aimed at improving the understanding, care, and treatment of developmental disorders.

The NICHD Brain and Tissue Bank serves as an intermediary between the research community and people who wish to donate tissue for research at their death. The bank safely stores the tissue until qualified researchers request the tissue for research which has been approved by their Institutional Review Board. Both people with developmental disorders and people free of disorders are encouraged to register and donate tissue. Often it is the comparison of the unaffected with the affected that unlocks the medical mystery of a disorder.

If you are interested in becoming a registered donor, or if you have any questions or concerns regarding the donation process, please contact Melissa Larkins, Project Coordinator, at (800) 847-1539 during normal business hours (9 a.m.-5 p.m. EST, Monday through Friday). Ms. Larkins can be reached any time in an emergency. Thank you for taking the time to consider tissue donation.

Please visit their website or contact: Anthony Weldon Project Coordinator Brain and Tissue Bank for Developmental Disorders University of Maryland 655 W. Baltimore Street, 13-013 BRB Baltimore, MD 21201-1559 USA Toll free: (800) 847-1539; Local: (410) 706-1755 Fax: (410) 706-0020 Email: or

Stanford Neuromuscular Biobank

The Stanford Neuromuscular Program provides quality care and drives research to improve the lives of those affected by neuromuscular disorders. This program relies on our having a detailed understanding of the causes and associated symptoms of neuromuscular disorders, a difficult task being undertaken by collaborating with researchers around the world. Given that many neuromuscular disorders are relatively rare, it is often difficult for researchers to obtain samples from those affected by these conditions. For this reason, we have established the Stanford Neuromuscular Biobank that will coordinate collection, preservation, and sharing of samples. The Biobank aims to facilitate research toward effective treatments by sharing precious biological samples from people affected by neuromuscular disorders with the international research community. To learn more and register, click here.