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 plan ahead. Finding researchers who need tissue, figuring out which specific tissues and how it must be recovered and preserved in order to be usable for research, locating a pathologist who is available to carry out the tissue recovery, signing the required consent documents, and assuring hospitals that all is in order–these things cannot be done at the last minute. 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.