Who We Are

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 be an all-volunteer organization, allowing us to direct over 90% of funds raised directly to the researchers who are working on a cure or treatment for Choroideremia.

2007 - 2008 Board Of Directors


Four committees have been created to conduct the Foundation’s affairs. In addition to the Executive Board and the Board of Directors, there are four standing committees:

Nominating -

This committee shall canvass the members to determine which members are interested in serving as directors. The Nominating Committee shall report its recommendations to the Executive Committee and shall annually nominate one candidate for each vacancy among the officers and directors.

Membership -

This committee shall formulate and implement proposals to publicize the existence and objectives of the Corporation and solicit support for the Corporation by urging candidates to become members.

Fund Raising -

This committee is to raise funds for the purposes of the Corporation. The committee may propose and implement plans for such Fund Raising activities by solicitation of members, non-members, and to other organizations which may desire to contribute funds for the eventual elimination and cure of Choroideremia. The committee may seek grants from appropriate agencies, foundation and benevolent trusts, as well as from any other sources.

Program -

This committee shall formulate proposals for programs and activities to effectuate the purposes of the Corporation, including identification of and outreach to those affected by Choroideremia, support for those affected and their families, promotion of greater understanding of Choroideremia among those affected, the parties, the medical profession and the research community, and for promotion of research intended to develop otential treatments and cures for Choroideremia, and coordination with public and private agencies to focus greater resources on Choroideremia.

The Board meets several times a year, the committees, more frequently. A special thank you goes out to the original Board of Directors. Without their hard work and dedication, we would not be where we are today.

Initial Board Of Directors

* In memory of the late Robert Jarrett *
*** He now has perfect sight! **


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