The Most Precious Gift for Medical Research

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!

Links:

• Learn more about the FSHD tissue donation registry

To all of you who have supported our FSHD Tissue Registry project, we are deeply grateful! We continue to put significant effort into fine-tuning the registry system, with bi-weekly calls between Daniel Perez, CEO, President, and Chief Science Officer of the FSH Society, and the amazing staff at NDRI. Our tissue donation registry is now capable of recovering the most comprehensive collection of FSHD muscle samples ever attempted.

We’ve received strong interest from the scientific community. To date, we have registered six labs that are ready to receive post mortem tissue donations, four who wish to receive surgical donations, and two researchers who need tissue from unaffected family members.

Around two dozen patients have also registered as tissue donors. That’s a great start, but we need many more to sign up! Registering to donate tissue is very much like signing up to be an organ or bone marrow donor. If you know that this is something you wish to do, please make arrangements now because later… may be too late.

Over the past year, we have unfortunately lost a number of FSH Society members. Some had reached a ripe old age, while others were taken too young due to accidents or illness. Their families reached out to us during their loved ones’ final moments hoping to make a tissue donation, but by then it was impossible to obtain signed consent forms, obtain permission from the hospital, and locate a pathologist within the NDRI network who could recover the tissue.

Considering the rarity of FSHD—and how rarer still it is for a patient to pass away or to undergo surgery—these lost opportunities are painful. Registering in advance is the key to fulfilling patients’ wishes and ensuring that these most precious gifts for FSHD research can go forward. What we do today will build a brighter future for everyone with FSHD.

What can you do? If you are affected yourself, be sure to register with NDRI now. If you have family members or friends who are affected, speak with them about the importance of registering soon. 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.

Thank you so much for your help.

Links:

• Frequently asked questions about tissue donation