By June Kinoshita | Chief Strategic Programs Officer
Our national FSHD biospecimen registry is up and running. We have successfully completed a surgical and post mortem donation, with precious FSHD tissues going directly to a cutting-edge laboratory. What we now need to do is greatly increase the number of individuals who have signed up for the registry. Every time I'm in front of an audience of patients and families, I urge them to register now, just the way many of us sign up to be an organ donor when we receive our drivers' license. This is not something to put off to the eleventh hour. Whenever I hear news of an FSH muscular dystrophy patient who has had surgery or who passed away without making a tissue donation, it feels like a big loss to the community. These tissues are critically important for advancing our knowledge about how to cure FSHD.
So, early next year, we will launch an educational campaign to raise awareness about the biospecimen registry. We will send out a questionnaire that will test people's knowledge about tissue donation, and hopefully by the time they complete the simple survey, they will understand and be motivated to register. If you are affected by FSHD, I hope you will make time this holiday season to sign up. Please encourage affected family members to do so as well. This is the most precious gift you can give to your future, your family's future, to the FSHD community as a whole.
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.
With gratitude to all who support this project, and Happy Thanksgiving!
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