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Cure AHC’s mission is threefold- to find the likely thousands of undiagnosed or misdiagnosed patients in the world, to dramatically improve quality of life for all those with alternating hemiplegia of childhood, and to fund research to get to the cure. 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.
We are a volunteer-only organization, global in focus, based in the USA. Our board of directors is 15 in number by our by-laws. We meet via conference call once per month, currently on the 2nd Saturday of each month at 9 AM EDT/EST with about 90 minutes duration. We have an expectation of at least 10 hours of volunteer work on behalf of Cure AHC per month and an annual financial commitment of at least $10,000. Our fixed expenses are typically under $10,000. We have no paid employees, but occasionally engage with consultants for specific projects (such as event planning, strategic planning, awareness marketing). The board functions as volunteer staff, along with a volunteer team of about 50 standing volunteers and a variety of situational volunteers