The children of the Curing Retinal Blindness Foundation (CRB1 Fund) are all blind or visually impaired due to a defect in the CRB1 gene. There are an estimated 300 kids in the United States with CRB1 degenerative retinal disease. This rare disease has left most of these children either blind or severely visually impaired. Most of the kids with this blindness do not have enough vision to read print, they are Braille readers. They do not have enough vision to travel safely, they are white cane users. Whether they are currently diagnosed as Lebers Congenital Amaurosis (LCA), Retinitis Pigmentosa (RP) or another retinal dystrophy, the prognosis for all of the kids is the same: if no treatment is found, the CRB1 kids will eventually lose all vision cells and will be living in darkness.
There are treatments working for other retinal diseases, but not CRB1. Our families are working to fund research that will bring those treatments and potential others, to those affected by CRB1 degenerative retinal diseases.
Our mission to find a cure for CRB1 started in 2011. We discovered that with enough funding and the right connections, we could begin a path toward sight. In just over a year, we have connected with twenty other affected families, in twenty different towns, reaching across the USA from the West Coast to the East Coast and across the Atlantic Ocean to Europe. We have found top retina and advocacy specialists to collaborate with and move our mission toward the cure forward. Because of support from donors like YOU, we have come so far. Now we need continued support to achieve the goal of sight for all kids affected by CRB1 degenerative retinal disease.
Our goal right now is to fund multiple research projects so that within 5 years we have a multitude of options of good, safe, effective treatments for all of our kids. It typically takes $200,000-300,000 for a researcher to do a 3 year study for a genetic disease. As soon as we raise the necessary money, our Medical Advisory team, comprised of top retinal disease experts, will find the best scientists to give that money to and get the research work done. The more money we raise, the more research projects can get started. And the faster we raise it, the sooner multiple projects can get underway.
We cannot do this alone. We do not want to do this alone. So far 20 CRB1 families have united to proceed on this mission together, with continual outreach to find all of the affected families. We are growing to be the driving force for research for our CRB1 gene as well as an advocacy and support group for our families living with this blindness. All of the affected families know that it is our own family and friends and our communities that have supported us thus far in our mission of raising blind and visually impaired children to be the successful, magnificent, and happy kids that they are… and now we need that love and support to move us forward on the mission of sight!
All of the CRB1 kids are so very blessed to have so many people continuing to support this miracle mission. We are forever grateful of your support thus far and pray you’ll continue your generosity. Helen Keller said it best: Alone we can do so little. Together we can do so much.
Please go to our FACEBOOK page, Curing Retinal Blindness Foundation, and LIKE us to show your support and stay updated on how your contribution is making a difference! Click here to connect with our Facebook page!