The Foundation to Fight H-ABC
We created the Foundation to Fight H-ABC because there is currently a lack of awareness surrounding H-ABC. It affects our family in a very real way, but we understand that most people have never heard of H-ABC. Just because a disease is rare does not mean it should receive less attention or scrutiny. Moreover, research on similar conditions has been ground-breaking, and the research currently underway for H-ABC can potentially be applied to other neurological conditions. Scientists are still in the early stages of discovery, but we have high hopes for their progress.
Our organization is fully authorized as a non-profit charity, so all donations are tax-exempt under IRS Section 501(c)(3). See the link below for a copy of our legal notice, including tax ID number.
Our scientific advisory board includes: Steven J. Gray, Ph.D., Dept. of Opthalmology Gene Therapy Center, University of NC; Ernesto R. Bongarzone, Ph.D., Dept. of Anatomy and Cell Biology, University of Illinois; and Marc P. DiFazio, M.D., Medical Director, Ambulatory Neurology, Children's National Hospital System.