Become a CRF member today! Besides supporting research for a cure for Choroideremia, your membership provides you with regular e-newsletters with updates on the latest research relating to CHM as well as fundraising and other activities of the Choroideremia Research Foundation. Membership options vary greatly, and all support is both appreciated and vital to the success of our mission. Please click HERE to become a member today!
In the mid-1990s, a young Choroideremia sufferer started an email support group for people with Choroideremia and their families. As more people found and joined this email list, ideas started circulating about the possibility of starting our own Foundation dedicated to finding a cure or treatment for Choroideremia. Some of the original members met at the Visions 1998 and 1999 conferences in Chicago and Los Angeles. Enthusiasm grew as more ideas were exchanged via email and phone.
Thanks to the efforts of many volunteers, the Choroideremia Research Foundation was founded and incorporated in early 2000. In the few years that it has existed, the Foundation has grown considerably, with members from around the globe. The Foundation continues to direct over 90% of funds raised directly to the researchers who are working on a cure or treatment for Choroideremia.
Choroideremia (CHM) is an X-linked recessive retinal degenerative disease. Women are carriers. Generally, only men suffer vision loss, but in rare cases women are also affected. During childhood a person diagnosed with Choroideremia will experience night blindness, and as the disease progresses, they lose their peripheral vision and depth perception, ultimately leading to blindness.
Choroideremia affects retinal epithelium and choroid layers of the retina. The disease has been traced to a specific, unique defect of the X gene. A defect in this gene prohibits the body from making RAB Escort Protein-1 (REP-1). The lack of this protein prevents essential nutrients from reaching the retina causing deterioration of the retinal layers.
The Foundation began working on treatments and cures fifteen years ago. We underwrite the top researchers, and they have rewarded us with the molecular biology and animal studies needed to ensure the promise of gene therapy as a cure. The science is there. Human trials are under active consideration in the USA, Canada, and UK. All it takes is money, which the Foundation and its friends will continue to raise.