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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, [...]

Ledyard, CT (Oct. 25, 2017) — The Oct. 14 ‘Dinner in the Dark’ event hosted by Sofia Sees Hope raised nearly $200,000 to support its advocacy and education programs for […]

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 […]

Sofia Sees Hope Co-Founder Laura Manfre will help provide the LCA community’s perspective to a Food & Drug Administration panel Thursday about a proposed genetic therapy for Leber congenital [...]

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 […]