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Sep 15, 2016

We have launched!

This is me proudly wearing my Doug & Gracie T!
This is me proudly wearing my Doug & Gracie T!

We're thrilled to report that the FSHD tissue donation registry has officially launched. We have registered our first researcher who is requesting biospecimens from FSHD patients, and have initiated arrangements to recover muscle from a patient who is planning a scapular fixation surgery. We have also heard from a biotechnology company that needs muscle specimens from FSHD patients in order to validate its drug screening system. 

In a few weeks, we will send out our brochure by the US postal service to several thousand patients. We hope many will register to make this invaluable contribution to research.

Thank you so much for your support! With the funds raised so far, we will be able to fund a post-mortem recovery as well as several donations resulting from surgical procedures.


Jun 13, 2016

FSHD tissue donor registry nearing launch date

Cover of our brochure
Cover of our brochure

Thank you so much for supporting our tissue donation project. The consent forms are now going through an institutional review board on the use of human subjects in research. We have finalized the protocols for specimen recovery. It was challenging because FSHD affects individuals in such diverse ways, and also because we want to collect tissues that people might not think of as being important for understanding FSHD, yet could lead to new and important discoveries. At the same time, we needed to keep in mind that a pathologist would have only a few hours to complete a recovery, so we had to set priorities. And we also needed to consider the feelings of prospective donors and family members about having tissue removed from exposed sites such as the face or hands, and so we conducted a survey to find out how people felt. 

We're now in the home stretch! We are going to be reaching out to researchers who have expressed interest in receiving tissue so that they can submit their requests for approval. We anticipate officially launching the registry by this fall. Coincidentally, we have received several inquiries over the past months from patients who have been trying to find a way to bequeath their remains to science.

The launch of the registry will be a milestone for the FSHD community. With your support, we'll be ready to make those most precious gifts for medical research a reality. 

Thank you!

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