Family Stories

15 states with an established Rare Disease Advisory Council: Alabama, Kentucky, Illinois, Massachusetts, Minnesota, Missouri, Nevada, New Hampshire, New York, North Carolina, Ohio, Pennsylvania, [...]

Fifteen states done, 35 to go. Fifteen states have established a Rare Disease Advisory Council (RDAC) to give the rare disease community, including those living with Leber congenital amaurosis [...]

In the debut of Sofia Sees Hope’s ‘Let’s Chat About …’ monthly webinar series, Ben Shaberman of the Foundation Fighting Blindness, provided his Zoom audience with a plethora of information [...]

ProQR Therapeutics reached an important milestone by completing enrollment in the next pivotal phase of clinical trials of sepofarsen, a developing RNA therapy for treating LCA10, a form of Leber [...]

Born with cerebral palsy (CP), Michael J. Kalberer grew up with a philosophy that has served him well throughout his 43 years. “My parents raised me as an individual with a disability, not a [...]

By Ben Shaberman Senior Director, Scientific Outreach & Community Engagement Foundation Fighting Blindness When I joined the Foundation Fighting Blindness as a science writer in 2004, I [...]

By Jack McCormick I must admit, when I learned that my vision was slowly deteriorating, I lost hope. I didn’t know what the future would bring. I knew that with worse vision came more [...]

Danielle Senick of Norwich, Conn., reached out to Sofia Sees Hope more than three years ago when she needed answers about her deteriorating vision. Doctors diagnosed Danielle at age 6 months with [...]

Building on her son’s love of music, singing, moving, and reading, Laura Steinbusch created a multilingual children’s songbook called Lux+Louise to help youngsters learn music by braille. With [...]

By Jack McCormick I first heard about coronavirus on my way back from a weekend of skiing in mid-January. It seemed to be the only thing the radio station we were listening to was talking about. [...]