By June Kinoshita | Executive Director
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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