The evening of the CureFSHD Gala on November 11, 2016, in Boston, Massachusetts, was one of those magical moments when we were overcome with gratitude for the generosity, courage, and life-affirming energy of our community. Over 250 patients, families, researchers, doctors, and benefactors had gathered to celebrate the FSH Society’s 25th year. We premiered the short documentary, “Into the Light,” which chronicles the long, arduous journey that has brought us from a world where FSHD and those who live with it were in the dark, to a place illuminated by knowledge and hope.
Trisha Sprayberry said it best when, afterward, she wrote: “One moment of the night that stuck out was speaking to a researcher about why we were all here. She had said that for her, it really puts the face and heart and strength in what she does. She had the most beautiful, humbled, real smile as she said that when she is in the lab, it’s all business, but when she came to this meeting, it gave her work its true home.”
“I had told her that for me, being a patient, coming to the conference does feel like home. Out there in the real world, FSHD is a rare disease, it’s virtually unheard of. And no one cares. But here, these are all people who care, who are also just like us. And you can feel the love and the dedication and the heart of why we are all here.”
Your voices and faces are with us each and every day as we work to advance research and improve health for our community. We couldn’t do it without your generous and committed financial support. For that we are deeply grateful, in this and in all seasons.