to bring together families with common concerns and
worries, collect and distribute information about the form
of LCA caused by RDH12, and, most importantly, to
ensure that significant funds are devoted to the study
and development of treatments for LCA caused by RDH12
The RDH12 Fund for Sight has awarded
research grants totally more than $500,000 to
support the development of a cure. The most
recent award, in 2014, was to Dr. Debra
Thompson at the Univeristy of Michigan for her
gene therapy. The fund has raised nearly
$1,000,000 to support the cure.
Read up on the Fund and its families in our
most recent newsletter.
In July 2010, four families met at the Lebers Congenital Amaurosis (LCA) conference in Philadelphia. We immediately
bonded over one thing we all had in common - a young child with LCA caused by mutations in the same gene, RDH12.
This conference was both an exhilarating and frustrating experience for each of us. We saw reports of new therapies
being made available to some LCA patients that were changing their lives and giving them their vision back. What had
looked like an assured future of blindness for each of our children didn't look like it was as certain as it once was. They
didn't have to go blind. Although this work showed what could be done for LCA, none of these treatments were going to
work for our children. The cure for our children's disease was so close but so far.
It was at this time that we decided we were not going to patiently wait in line for the research to finally turn its attention to
our children's disease. We were going to try to make sure that a cure would come before their sight left. This how the
RDH12 Fund for Sight came to be.
We have since found additional families across the country and across Europe, and hope to continue to find families like
ourselves so that we may continue to build our community. Share our resources, knowledge, and experiences for each
Please join our efforts to find a cure as our children will eventually lose their sight to this disease without one. Whether
you're a friend or family member of someone who's affected, or are touched by the stories you read here about our
children, we need your help. Your donation can help lead to a cure someday for all people affected by RDH12. We hope
the cure comes soon.
Read through our site. Learn about RDH12 LCA. Learn about our kids. Donate to our cause. We want to ensure our
children have a future of sight.
Thank you for your help.
Our Local Fundraising Groups