Mission: Through research, education and family support, we have ONE MISSION: END AHC. Our mission is to find the cause(s) of AHC, develop effective treatments and ultimately find a cure, while providing support to the families and children with AHC by funding research to accomplish these goals. Secondarily, we strive to promote proper diagnosis, educate health care professionals, the public and related organizations, encourage the worldwide exchange of information and advance the development of an international database of all AHC patients.
Results: We have grown from a grass roots organization to a global foundation, helping families around the world with AHC. We have the largest database of AHC families in the world including a biobank and Red Cap database. We are recognized as the leader in AHC research and Family support and are always looking for ways to improve our presence and fulfill our mission.
Target demographics: All those diagnosed with Alternating Hemiplegia of Childhood
Direct beneficiaries per year: 1) AHC families by directing them to available resources, connecting them to experts in the field, and providing them with the most up to date information available regarding AHC research and advances for daily care of an AHC patient, 2) School and Health care professionals by educating them about AHC, 3) Researchers by providing over $250,000.00 in grants to move the research forward.
Geographic areas served: The United States
Programs: 1) Raise money for research to find a treatment and a cure, 2) Host a Biennial Family Meeting, 3) Educate the medical community and the public, 4) Spread awareness through social media, 5) Support families, 6) Maintain an interactive website for information and resources.