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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Alternating Hemiplegia of Childhood Foundation

a/k/a: AHCF

Address

31250 Plymouth Rd.
Livonia, MI 48150
USA

Phone

888-557-5757

Fax

650-365-5798

800 Number

888-557-5757

TDD

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Email Address

info@ahckids.org

Website

http://www.ahckids.org

The Alternating Hemiplegia of Childhood Foundation (AHCF) is a non-profit, tax exempt organization run by parents of children with Alternating Hemiplegia of Childhood (AHC). Their 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, they 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. AHC is a rare neurological disorder in which repeated, transient attacks of hemiplegia occur, usually affecting one side of the body or the other, or both sides of the body at once. The attacks may last for minutes, hours or even days and are normally relieved by sleep. Typically the onset of symptoms begins prior to 18 months of age. AHC episodes are often associated with triggers that precede or induce the attack. Triggers for AHC episodes may include - but are not limited to - environmental conditions (such as temperature extremes or odors), water exposure, physical activities (exercise, swinging), lights (sunlight, fluorescent bulbs), foods (chocolate, food dye), emotional response (anxiety, stress, fright), odors (foods, fragrances), fatigue, and medications. Recently, the discovery of the mutation in the gene ATP1A3 has been identified as one cause of AHC and is found in two-thirds of those affected while ongoing research is close to identifying the remaining genetic mutations. Once the causes have been identified, AHCF will shift their focus to developing much needed treatment options.

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