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Aicardi Syndrome Newsletter


The Aicardi Syndrome Newsletter provides information and support to families who have a child with Aicardi syndrome and acts as an information gathering and sharing resource for professional and health care personnel. The Newsletter provides a network of information, communication and support to families, strengthens and empowers families in becoming advocates for their child, and gathers current research articles and findings regarding Aicardi syndrome and other related topics for distribution to member families.

Denise Park Parsons
Aicardi Syndrome Newsletter, Inc.
1510 Polo Fields Court
Louisville, Kentucky 40245
Phone: 502-244-9152

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History of the Aicardi Syndrome Newsletter and the Aicardi Syndrome Foundation

Denise Park Parsons

May 2003

The Aicardi Syndrome Newsletter had it's rather inauspicious beginnings in the Fall of 1983. A letter to Exceptional Parent magazine asking for information prompted a response from families who had daughters with this rare disorder. That led to a round-robin letter put together by Gail Zitnay of Columbia, Maryland and shared among several families. Denise Park published the first "official" newsletter in the Fall of 1984. It consisted of letters from nine families and was typed on a typewriter on the dining room table. For several years thereafter, the Park family and membership donations from families funded the newsletter privately.

The newsletter was incorporated as a non-profit organization in 1991, and
the logo designed by a member family of a quill and convoluted heart shape was copyrighted. (The quill represents the correspondence of the newsletter families.) In the nineteen years since, the newsletter has grown to include over 225 families worldwide. There are three published yearbooks of the girls, two medical-model surveys, participation by member families in several published research studies and countless newsletters.

The first Aicardi Syndrome Conference was held in Miami County, Ohio in
June, 1992. Eighteen families attended. At the 2002 conference in Louisville,
Kentucky over 60 families attended. In preparation for the first conference,
colors were chosen to represent the organization. Pink signifies that Aicardi
syndrome affects only females. Purple represents the passion that the families have for their daughters. And white signifies the purity of our daughters.

In 1991, Al and Cindy Meo of Chicago, Illinois incorporated a non-profit organization called the Aicardi Syndrome Foundation. The Foundation has a copyrighted logo, the profile of a young girl -- their daughter, Kristen Meo. The Foundation is funded by private donations and various fundraising events, and contributes significant monies for ongoing research into the cause of Aicardi syndrome. The Foundation also funds publication and distribution of the Newsletter as well as the Aicardi Syndrome Family Conferences.

Working in cooperation, these two "sister" organizations strive to meet the needs of families worldwide who have daughters with Aicardi syndrome by providing a network of communication, information, support, and research opportunities.