Ashkenazi Jews carry the Usher Syndrome Type 1F genetic mutation.
When both parents carry the gene, there is a
chance of the child being affected.
Usher Syndrome Type 1F is the leading cause of deaf-blindness among the Jews.
Much of the research into a cure for retinitis pigmentosa is genotype specific. There is currently no research for type 1F. One of the major reasons for this is the lack of an animal model; without an animal model, there can be no clinical trials for those with type 1F because potential treatments must first be tested on an animal model. Thus, the initial goal of the foundation is to fund the creation of an effective animal model for Usher Syndrome type 1F and, subsequently, to fund research into a cure using this animal model.
Right now, parents of children with type 1F are sitting and watching their children's vision fade while clinical trials for other Usher genotypes are offering encouragement and hope to others. Please help make hope a reality for those with type 1F.
"Fear, panic and down right anger has overtaken our family. As if being deaf and overcoming that obstacle was not enough, we have learned that our son will gradually lose his vision. This is a cruel, unfair disease. We need to find a cure. I will stop at nothing as his mother to raise awareness about Usher Syndrome type 1F."
"I have many dreams, but my main one is to be a teacher...I want to teach chemistry. Chemistry is a subject that often requires lots of visuals such as diagrams, pictures, and labs. In order to explain these visuals to the class, I need to be able to see them."
"Two years ago, I officially gave up driving altogether because I knew it was the best decision I could make for my safety and for the safety of others. While I know it is no longer safe for me to drive, I continue to struggle to accept the fact that I have given up such an important facet of my independence."
"I get frustrated that I can’t see well during nighttime, and I can’t chat with other friends or lipread in the car at nighttime. Sometimes they put the light on so that I can see better. I recently started using a mobile cane during nighttime when I feel that I need it...I also have difficulties in reading black fonts on a white background."