AHC was identified as a disorder in 1971. In the early days every parent who had an AHC child was essentially in isolation relying on the physician who diagnosed them to network and connect with other families. AHCF has worked very hard over the years to educate the medical community and slowly we have seen an increase in the number of Medical Specialists who recognize AHC and as a result the age at which the diagnosis is made is much earlier, beneficial for patients and family alike.
Today because of the technology we have at our disposal we have made great strides in diagnosis, education and networking among families. That said, there are still times when you have questions or when you are in a situation where you don’t know who to turn to. We are here to help to the best of our ability. We have a very active Board that includes parents who have both young children and adult AHC “kids”. Their experience is invaluable and they are always available to answer any questions and share their experiences with you. You can find their contact information here http://ahckids.org/foundation/board-of-directors/. We also have a Medical Advisory Board comprised of the leading experts on AHC which we rely on for advice for the foundation and families.
AHCF has a coordinator whose job is to be the triage person for the Foundation. The coordinator’s role is to evaluate the situation and direct you to whomever you need to have it taken care of. You can contact the coordinator any time @ firstname.lastname@example.org or directly email@example.com or via phone 313-663-7772.
Some of the circumstances in which the foundation can be helpful are: