RVCLresearch.org was established to coordinate fundraising events, Energy 4 A Cure ("E4AC") Foundation, to support research for an inherited disease called Cerebroretinal Vasculopathy (CRV), now known as Autosomal Dominant-Retinal Vasculopathy with Cerebral Leukodystrophy (AD-RVCL).
RVCL is a rare and fatal genetic disorder with no known cure. Dr. Atkinson and his group at Washington University School of Medicine have been working for several decades to increase their understanding of the disease. Through collaborations with physicians/scientists at the University of California at Los Angeles and Leiden University Medical Center in the Netherlands, twenty families across the world have been identified with this disease. In 2007, the specific genetic defect in all of these families was discovered in a single gene (called TREX-1).
On May 22nd, 2012 Dr. John P. Atkinson advised:
"On the research front, Dr. Atkinson recently returned from the Alliance for Lupus Research meeting in New York City. A subset of lupus patients, approximately two percent, have mutations in TREX 1, the same gene in which a mutation causes CRV-RVCL. The Washington University CRV-RVCL Team, along with colleagues at Oklahoma Medical Research Foundation, and a group in Germany have published articles about this association. Thus, some of the mutations in lupus patients are similar to those in CRV-RVCL. This important observation is hard to over-estimate because SLE (Systemic Lupus Erythematosus) is a disease that gets a lot of attention. Lupus is a major rheumatic disease in our practice and at teaching hospitals throughout the world. Having the same gene involved in lupus as in CRV-RVCL means that the TREX 1 gene/protein will get much more attention. More biomedical scientists looking at this gene/protein will only advance the field."
RVCLresearch.org believes the cure is attainable by continued research. Through annual fundraising events, corporate and individual donations from as small as $1 to as much as $10,000 per year will allow researchers to move one step closer to our shared goal of a final cure.
Energy 4 A Cure Foundation has been approved by the IRS as a tax exempt Public Charity Foundation under section 501(c)(3) effective June 3, 2009.
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Board of Directors
President and Treasurer
Sharon L. Bevers
Vice-President and Secretary
Steve T. Bevers
Other Board Members
Paul K. Gilbreath