Tami Morehouse made research history in the Leber congenital amaurosis world, and in the nation, when at age 44 she became the oldest person in a successful LCA-RPE65 genetic therapy […]
By Jack McCormick Parents want nothing but the best for their children. This is why I am so often asked questions like, “I have a 6-year-old son who has a […]
By Allison Galloway Somehow I made it through 37 years of life without ever meeting a blind person. Then my 3-year-old son was diagnosed with a rare genetic disease called […]
Annie Cohane takes singing lessons and piano lessons, she runs track, she’s working on swimming, and she’s a second-grader at an elementary school in Norwell, Mass. She’s 8 years […]
Your voice counts! Lawmakers on the state level need to hear from people living with Leber congenital amaurosis (LCA) and other rare diseases to help secure funding for research, patients’ needs, [...]
A two-day conference in Washington, D.C., earlier this month offered the opportunity for organizations such as Sofia Sees Hope to discover the latest in the rare disease community, meet the […]
Our fourth annual Dinner in the Dark event broke all our past records: most attendees, most money raised, and most fun ever. More than 370 guests attended Dinner in the […]
At three o’clock Thursday afternoon, Beth Chiarella and I had a very public moment of tears and hugs at Baltimore–Washington International Airport as we received news that after a day […]
Doctors diagnosed Jack McCormick in high school with Leber congenital amaurosis due to mutations in the RPE65 gene. With a mix of feelings about his diagnosis, it was when he […]
Simon Wheatcroft held his audience spellbound at the Global Genes conference in California where he detailed his journey from losing his sight as a teen-ager due to retinitis pigmentosa to […]
