What is AHC?

AHC (Alternating Hemiplegia of Childhood) is a complex, ultra-rare neurological disease. The majority of cases (approximately 80%) are caused by mutations in the gene ATP1a3, as well as other potential genetic root causes, which Cure AHC funds active research to discover. The hallmark of this disease is episodes of temporary paralysis that alternate from one side of the body to the other, sometimes engulfing the entire body, lasting anywhere from minutes to days at a time. 

There is a spectrum of severity, with ranges from fully wheelchair-bound individuals to those who are able to live semi-independently. We call those living with AHC “Champions,” for they triumph over the significant limitations of their disease in amazing ways!  Despite these challenges, AHC Champions are very determined and good spirited children and adults. Their parents are truly exceptional people, managing never ending medical appointments, therapists, case workers, teachers, medical equipment providers, and other caregivers.

Cure AHC is actively involved in finding ways to empower sufferers and their families to battle the complexities of living with this rare disease.

Mission & Values

Cure AHC envisions a world where Alternating Hemiplegia of Childhood no longer robs its sufferers of the chance to participate fully in life, and where no case goes undiagnosed for lack of awareness. Our mission is to financially support research and therapies, improve quality of life and strengthen connections to the global AHC community.

History

December, 2012 marked a historic time for AHC research and parent interaction. On the heels of Duke University discovering the mutation in ATP1a3, Duke, in partnership with the European Network for Research on Alternating Hemiplegi (ENRAH), facilitated a global gathering of researchers along with the heads of nearly every AHC Patient Advocacy group in the world.

Jeff Wuchich (who would later go on to Co-found Cure AHC), attended this symposium thanks to the invitation of the European AHC Association heads and the generosity of both Norphan Pharmaceuticals and AHC Association of Iceland, President Siguradur Johannesson. This conference was the beginning of a strengthening of collaborative efforts, Jeff and his wife Renee recognized the value in forming an organization based in NC to work closely with Duke, with the international researchers, and other patient groups involved in the Symposium. A number of other parents agreed, as did some business professionals sympathetic to our children. Thus, Cure AHC formed and our journey to empower sufferers of Alternating Hemiplegia of Childhood and their families began. We invite you to join us, as we are “soaring on wings of HOPE.”