by HILARY A. C. HOOVER, Ocala, Florida
I tested positive for the FSHD gene and am currently asymptomatic. Due to my status, I was asked to donate muscle tissue via open muscle biopsy at the Kennedy Krieger Institute (KKI) in Baltimore, Maryland. Knowing that my donated tissue will be used in research to test new treatments made me less nervous about the surgery. I took a silly picture in pre-op and posted it to my Facebook page to raise awareness.
I am very glad that I was able to take part in the research at KKI. My visit opened up an important conversation with two of my brothers who have not been tested at this time. Through them, I have six nieces and nephews. I made my donation for them and for all the children growing up with the potential to carry the FSHD gene. It was important to me to give what I can to be part of the solution. The experience brought me closer to my family and friends, and further opened lines of communication regarding FSHD.
So happy for you in taking your time for this disease. I will return from overseas after 36 years to the states. Then , I will hopefully volunteer for fundraising for research. My daughter has FSHD. Your photo is great! Thank you
Thank you Hilary for helping to find a cure. I will be donating tissue next month at the UofW in Seattle.
I donated tissue twice at UW in Seattle for Dr. Wang’s research. It was borderline painful (ok – maybe painful) but I knew it was needed.
John