In December 2013, we received a request for tactile bookmarks, quite a few of them, from families across the United States for a fund-raising event. On further enquiry, I discovered that the Curing Retinal Blindness Foundation is a foundation run and driven by the families of children with various diseases associated with the retinal gene. I was eager to publish a little more about their efforts to raise awareness and funds for retinal research and to tell their story, in brief, on our site. Below is an exerpt from the Foundation’s home page and a paragraph regarding their fund-raising events written by Wendy, one of the co-founders.
Our mission is to fund CRB1 research and move to a cure as soon as possible. The Curing Retinal Blindness Foundation is a 100% volunteer organization. The kids in our foundation are blind or visually impaired due to mutations in the CRB1 gene causing a rare genetic disease, a degenerative retinal disease (Leber’s Congenital Amaurosis, Retinitis Pigmentosa, or cone-rod dystrophy). Some of the kids have already lost almost 100% of their sight.
Many of the kids still have some useable vision, but it will deteriorate if nothing is done to stop the degeneration. We are working to stop that degeneration and ultimately restore all CRB1 vision!
In 2012 we joined with other families who all have children with the same form of blindness and we formed the Curing Retinal Blindness Foundation (crb1.org)
to fund research for the CRB1 gene defect. This is the 2nd year we have used Tactile Vision’s Braille Bookmarks in honor of Louis Braille Day. The bookmarks are a great way to let others see/touch Braille in conjunction with print and to help our visually impaired kids be a part of raising money for research.
The kids love the bookmarks. They are a nice large size and very sturdy. In both Ohio and Georgia we give the kids in their schools a bookmark when they bring in a donation.
In Pennsylvania, they used the bookmarks in conjunction with library outings and the other fundraisers they do. Thank you for producing such a great product!
Wendy, Kim & Kristin