Ivyland, PA -- (SBWIRE) -- 03/17/2016 -- This past February, the Curing Retinal Blindness Foundation helped to make history. The organization, which advocates for the funding of research towards a cure for CRB1 degenerative retinal diseases, was present on Capitol Hill on February 25 for the introduction of a bill designating February 28 as National Rare Eye Disease Awareness Day. Presented by Rep. Mike Fitzpatrick (PA-8), the bill was presented in print as well as in Braille—the first bill in US history to appear in both written forms.
The Curing Retinal Blindness Foundation takes this opportunity to celebrate such a momentous occasion in the fight for finding a cure for rare eye diseases that cause blindness. The Foundation was begun by Kristin and Mike Smedley, the parents of two children diagnosed with Leber's congenital amaurosis together with other affected families. Far from feeling defeated by the challenges presented by the disease, the Smedleys went on to assemble the nation's largest network of researchers, patients and donors to fund research for CRB1 retinal disease, as well as champion equality and accessibility for those living with rare eye diseases. By successfully designating February 28 as National Rare Eye Disease Awareness Day, the Curing Retinal Blindness Foundation hopes to connect with even more donors willing to assist in the search for a cure, as well as with families seeking a supportive community.
The Foundation's history-making trip to Washington, DC is only one of many events that the organization has in store for 2016. On April 1st, the Foundation will host its annual Cocktails for the Cure event in Bucks County, where guests can receive their own copy of the bill in Braille. There is an additional Cocktails for the Cure event happening in Lebanon County on April 30th and the popular Quarter Auction in Salem, OH in May. Also in May the foundation will take part in the Million Dollar Bike Ride through PENN's Center for Orphan Diseases.
Learn more about the Curing Retinal Blindness Foundation's upcoming events and news about developments in research and technology at http://www.crb1.org.
About the Curing Retinal Blindness Foundation
Was founded by families with CRB1 patients including Kristin and Mike Smedley, parents of two children diagnosed with Leber's congenital amaurosis, a rare eye disease that causes blindness in childhood. Undeterred by this challenge, the Smedley family recruited help from other affected families and founded the Curing Retinal Blindness Foundation. The organization raises funds to support research for a cure, and also provides supportive resources for families living with retinal blindness.
Learn more about the Curing Retinal Blindness Foundation at http://www.crb1.org and about their largest annual fundraising event, Bike the Basin, at http://www.bikethebasin.org.