From its Board of Directors, to its Family Support Newtork representatives, AHCF is a volunteer run organization. This allows us to funnel the vast majority of the donations we receive into AHC research. It does mean, however, that we rely heavily on volunteers from the AHC community.  Please consider helping us out in the facilitation of our fundraising efforts and the support of AHC patients and their families. Our specific needs include:

Committee Help Needed!

The Foundation is exploding with ideas, and is exploring numerous avenues to fulfill our mission statement. Our Board is strong and we have developed Committees to tackle pressing issues as well as investigate various ways to spread awareness, increase research and support the families. Please consider joining a committee, even if you have limited time, you can still make a very positive impact.

Family Support

If your interest lies in family support, creating ideas to help families connect, developing introductory and welcoming materials for new families, researching physical, social and developmental resources that would assist the kids and parents, please put your ideas into action and help us develop a support system to benefit the families and kids. Maybe you are interested in compiling a list of Federal and state by state resources or a much needed registry of all of the AHC knowledgeable Physicians/Neurologists in the US? Please think about sharing your ideas and give some of your time to making AHCF a strong advocate for the families!

Please contact Lynn Egan at lynn@ahckids.org to become a volunteer on the Family Support Committee.

Public Relations

If you have a passion for spreading the word about AHC, feel strongly about educating Physicians/Neurologists, teachers and caregivers, public and our legislature, please consider bringing your talents and energy to the Public Relations Committee. Maybe you would be good at utilizing and engaging the media, or developing a network of symposiums where we could advocate for AHC. We also need help creating informational materials, and work to develop a relationship with Eurordis and Nord. Within the Foundation you could help with the submission of articles for the Newsletter or awareness campaigns or help with our social media and digital footprint!!

Please contact Cate Cohen, cate@ahckids.org to become a volunteer on the Public Relations Committee .


The crux of our Mission Statement is to provide funds for research and find treatments and a cure for AHC. We need dedicated people willing to work together to research potential fundraising opportunities, reach out to possible donors and create ideas to generate the kind of funding needed to accomplish this lofty goal. Once a goal has been established and a campaign has been launched we need help developing strategic efforts to be successful. If you have held successful fundraisers in the past we also need you to help mentor first time fundraisers and create templates for various fundraising events that others can follow. Calling all persons that like to Network, aren’t afraid to ask for donations and love raising money!

Please contact Mollie Erpenbeck, mollie@ahckids.org to become a volunteer on the Fundraising Committee.

Please Note: Here at the Foundation our roles often overlap. We work together and expect support from each other in our efforts, so a project from one committee is very likely to generate assistance from the other committees. We love sharing ideas and the more help we get working together to accomplish our goals, the more the kids will benefit!




If you are looking to volunteer or donate, we are grateful that you have come to visit us. We have a number of ways you can be part of making a difference for those suffering from this disorder. Check out the support and fundraising pages as well as “About AHCF”.  We are very transparent about where your money goes, and we keep our operating costs below 15% of funds raised.  You will also see how your generosity is making a difference for AHC sufferers as we regularly post updates on our projects.  We invite you to get to know our kids & the struggles our families face in dealing with this debilitating disorder and please reach out to any of the Board members should you have any questions.

If you are a member of the medical community, we fervently hope you will assist us in spreading awareness of this disorder amongst your colleagues.  It is possible that nearly 90% of AHC cases worldwide are misdiagnosed due to lack of awareness and likely thousands of people who have AHC do not know it. We pursue partnerships with researchers looking to spur on research efforts and are here to help answer any questions you may have, so that we might point you in the right direction. We also aim to compile a database of doctors who are familiar with treating AHC patients, to assist families in the future.

If you are a member of the media, you will find that our In the News Section there is a Press Kit and that our About AHCF Section has some good overview information. Contact our Public Relations Committee to conduct interviews on behalf of the Foundation. Some of our families are willing to speak with the press as well, and we are happy to work with you in these situations.

We here at the AHC Foundation are excited about the future.  Promising research is underway.  While the road to the cure for AHC is likely long, we have a determined group of strong volunteers dedicated to the task.  We have dedicated our efforts to make a positive impact in the lives of those suffering from AHC and their families.  We invite you to join us on that journey.