Family Stories

One of Britain’s top Ophthalmologist’s delivered promising research news on several forms of Leber congenital amaurosis, including LCA13 (RDH12), LCA1 (GUCY2D), LCA2 (RPE65), and LCA4 (AIPL1). [...]

John Mills says he would crawl over broken glass if it led to a cure for his daughter’s visual impairment caused by one of the rarest of rare inherited retinal diseases. Fourteen-year-old Naomi [...]

Allison Galloway feels cautiously excited about a new genetics company prioritizing research into her children’s form of Leber congenital amaurosis known as LCA13 (RDH12).  “I would say I’m [...]

Parvi Gaddam has endured a lot for a little girl genetically diagnosed at 6 months’ old with a form of Leber congenital amaurosis called LCA3 (SPATA7). Like most parents discovering their child [...]

For the first time, early research data shows that a gene editing technique called CRISPR improved vision in people living with a form of Leber congenital amaurosis (LCA), according to Dr. Edmond [...]

Sofia Sees Hope this month unveiled a new name and logo — Hope in Focus — as the organization sets its course for the next decade of work to benefit the Leber congenital amaurosis (LCA) [...]

Why did we change our name? It’s simple: we’ve grown and matured as an organization. And we’re looking ahead to how we can best position this organization for the future. We were never about one [...]

We hear a lot these days about the necessity of the patient voice in developing treatments, especially for people living with rare disease, such as Leber congenital amaurosis (LCA) or other rare [...]

Living with vision loss, Tami Morehouse and Jack McCormick learned the challenging complexities of advocating for themselves so well, that they both now earn a living helping the general [...]

A new Foundation Fighting Blindness initiative just getting underway is a Natural History study of Usher Syndrome Type 1F (USH1F) caused by a mutation in the PCDH15 gene. The objective of the [...]