Aicardi Syndrome Newsletter Established in 1984 by a mother of a daughter with Aicardi Syndrome in order to provide information and support for families due to the extremely rare nature of this disorder.
Publications include a bimonthly newsletter brief, and two to three large digests annually which are distributed to member families worldwide. The Newsletter has also published yearbooks, family directories, and two medical-model surveys of affected daughters.
Contact: Denise Parsons
1510 Polo Fields Court
Louisville, KY 40245
(502) 244-9152
E-mail: http://AICNews@aol.com/AICNews @aol.com
Aicardi Syndrome Foundation, A.S. F. A not-for-profit, tax-exempt organization, incorporated in 1991. Working in cooperation with the Aicardi Syndrome Newsletter. The Foundation is funded by private donations and various fundraising events.
The A.S.F. has contributed financially to research into the causes of Aicardi Syndrome, and provides funds for the purchase of medical/adaptive equipment for affected daughters, publication and distribution of the Newsletter, and biannual Aicardi Family International Conferences.
Contact: Al and Cindy Meo
450 Winterwood Drive
Roselle, IL 60172
1-800-374-8518
E-mail: mailto:aicardi@aol.comaicardi@aol.com
Additional information can be found at the Aicardi Syndrome web site: http://www.aicardi.com/www.aicardi.com
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