November 3, 2012
I am extremely impressed with the passion and dedication of the board members of this foundation, and with the care they take to be a well-organized and smoothly-running small nonprofit. They have funded critical research for this rare disorder, research that may not have otherwise been possible, and which has already led to a major advance in our understanding of the genetics of this condition. I expect that they will fund future research providing the best chance for more effective treatments, or someday a cure, for AHC. I attended portions of the family meeting in San Franscisco in June 2012, and was struck by how well the presentations and services seemed to match the needs of the families attending. I am very excited to be part of the medical advisory board of the AHCF.
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