AHCF Can Help

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 @ ahcfoundation@ahckids.org or directly sharon@ahckids.org or via phone 313-663-7772.

Some of the circumstances in which the foundation can be helpful are:

Urgent:

• If your child is in a medical crisis and you wish to have your medical team consult with an AHC expert.
• This Emergency Room Protocol may help by accompanying your child into the ER, educating doctors unfamiliar with AHC, and your child. WORD format available here for customization to your specific needs. PDF format available here for review.
• Situations of a legal nature where you need an experts statement to diffuse the situation or provide confirmation to the sometimes disruptive symptoms of AHC
• If you would like your child’s brain donated to science if in a rare circumstance she/he passes away, we can help facilitate that request which helps the whole AHC community.

Significant:

• If you would like your child tested for the ATP1A3 gene.
• If you are unsure if your child has AHC but would like to talk to someone about it.
• If you just need someone to speak to out of frustration or concern we have a great family support team to help.
• We are here to answer questions you may have. No question is silly or stupid.

Helpful:

• Letters of need for school
• Letters of need for a travel visa
• Letters of need for insurance reimbursement in certain instances
• We can reach out to other families in your geographical area for support or recommendations for medical care, therapies, schools etc…
• If you’d like to volunteer we would welcome your involvement and direct you to the area of your interest We always need help!
• If you’re considering a fundraiser we can get you started speaking to our Fundraising team!
• If you would like to make a donation or sponsor a research project and are unsure who to contact we’ll gladly direct you.