“Alone we can do so little. Together we can do so much.” ~ Helen Keller
Mutations in the CRB1 gene cause Lebers Congenital Amaurosis (LCA), Retinitis Pigmentosa (RP) and Cone-Rod Dystrophy. CRB1 is the second highest incidence (10-13%) of all the LCA genes that cause the disease, yet as of 2010, research on CRB1 was not as advanced as other LCA genes.
In 2010, one family with children affected by LCA-CRB1 started asking retinal gene therapy specialists about how to develop a treatment for CRB1.
Right around that time another LCA-CRB1 affected family started asking about getting to the cure as well.
The two families connected and quickly found other affected families with the help of the internet and social media… and so the parent-focused quest began to raise and deliver funds specifically targeted to CRB1 degenerative retinal disease.
In May 2011 the CRB1 Fund was launched with the goal to raise money to fund research for CRB1 gene therapy.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” ~ Margaret Mead
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 children.
In that year it became clear that gene therapy would likely not be the one “fix” for all of the CRB1 children: mutations in the CRB1 gene do not simply cause one disease… our children fall into three different diagnosis: LCA, RP, Cone-rod dystrophy.
In an effort to broaden our reach of support and collaboration with donors, researchers, etc, the CRB1 Fund evolved into the Curing Retinal Blindness Foundation in October 2012. We are the only group working to bring together all CRB1 affected families to fundraise for research specifically for this gene mutation of degenerative retinal disease.
Our Board of Directors (family members of CRB1 patients) and our Scientific Advisory Board (experts in various fields relating to research) work together to ensure that every dollar raised is awarded to research teams that will work to move CRB1 degenerative retinal disease to treatments and cures.
We are families helping families and we 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 children!