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 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 Sharon Ciccodicola at sharon@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 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!

Would you consider being an AHCF board member?

AHCF is currently seeking to fill two “At Large” seats on our Board. We are seeking people that are aware of AHC and would be willing to be active participants in helping the Foundation move forward in achieving our goals of finding treatments and ultimately a cure while helping families and spreading awareness. To gain different perspectives we would consider family members of an AHC child and also those interested friends or colleagues that you think would be a good fit.

This is a very exciting time for the Foundation and much needs to be done. Besides voting on the frequent issues before the Board, the Board members are expected to lead by example and participate with your special talents wherever you can. We are continually adding information to our website, updating the family database and creating a database of donors, reviewing marketing proposals, planning for family meetings, symposiums and other events, developing materials both paper and electronic for fundraising and awareness and many more things to grow the Foundation. If you would be willing to commit some time and ideas we would love to put your name in nomination for a voice in the Foundation.

If this is something you or a friend would consider please let Lynn Egan lynn@ahckids.org know. We will need a short Bio to present to the Board. Thanks so much in advance for considering this rewarding commitment.

Thanks for your consideration to help AHCF!