|Have you ever felt like people are put in your life for a reason? Well that's pretty much how this group feels too! |
The CRB1 gene mutation is the second highest incidence (10-13%) of all the LCA genes. (LCA is a severe degenerative retinal disease) Yet as of 2011, research on CRB1 was not as advanced as other LCA genes. The Smedley Family in Pennsylvania launched an effort to progress the focus of research and funding on the CRB1 gene. They quickly found other affected families that were motivated to raise the funds necessary to get research started. And so the CRB1 Fund began!
In just over one year from it's launch, our CRB1 group grew to 20 affected families that were not only fundraising, we were offering our support to one another to help guide each other through the daily living with our blind and visually impaired kids.
In an effort to broaden our reach of support and collaboration with donors, researchers, etc, the CRB1 Fund has become the Curing Retinal Blindness Foundation. We are the only group working to bring together all CRB1 affected families and raise the money necessary to fund research specifically for this gene mutation of degenerative retinal disease.
Our group of families stretches across the USA from California to Pennsylvania, and reaches across the ocean to Germany! A worldwide effort indeed! With the commitment of the CRB1 families, the researchers, and the necessary funds, we believe the gift of sight is attainable for our kids SOON!
We are families helping families and we truly believe that this will in turn make the world an incredibly different and wonderful place for those born with degenerative retinal diseases. This is a project that will benefit all CRB1 gene families and all retinal degenerative disease cases.
We are honored that you are here with an interest in our mission. We look forward to your helping us achieve the gift of sight for all CRB1 kids!