In the Race
Now, here, you see, it takes all the blogging I can do to keep in the same place.
If I want to get somewhere else, I must blog twice as fast as that!
You see, I'm in
the Red Queen's Race...
Come to the Aicardi Party - Support a Great Organization
By Janet Evans
Saturday, Mar 8 2008, 08:38 PM
The Aicardi Party
The Wisconsin Chapter of the Aicardi Syndrome Foundation
is hosting the Aicardi Party,
a Beer and Wine Tasting Event on
April 12, 2008.
All proceeds will benefit the Aicardi Syndrome Foundation.
Join us to support a great organization and have fun!
Serving a wide selection of:
· Locally brewed beers
· Import beers
· Microbrews
· Fine Wines
· Hors d’oeuvres
Silent Auction
The Beer and Wine Tasting Event to benefit:
The Aicardi Syndrome Foundation
Saturday
April 12, 2008
7:00 p.m. – 10:00 p.m.
Oak Creek Community Center
8580 S. Howell Ave.
Oak Creek, WI 53154
www.aicardisyndrome.org
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Advanced Reservation: $25
Pay at the Door: $30
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Please mail or fax this form before 04/01/2008 to:
Aicardi Syndrome Foundation
1000 E. Park Boulevard Oak Creek, WI 53154
Fax: (414) 571-5415
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Aicardi Syndrome Foundation -Wisconsin Chapter
1000 Park Avenue
Oak Creek, WI 53154
www.aicardisyndrome.org
Aicardi Syndrome Foundation Fact Sheet
Aicardi Syndrome is a rare genetic disorder identified by the French Neurologist, Dr. Jean Aicardi in 1965. This Syndrome is defined as a rare disorder. The number of identified cases of children with Aicardi Syndrome is very difficult to calculate accurately, but has been estimated at 300 - 500 worldwide.
Aicardi Syndrome is characterized by the following "markers":
§ Absence of the corpus callosum, either partial or complete (the corpus callosum is the part of the brain which sits between the right and left sides of the brain and allows the right side to communicate with the left.)
§ Infantile spasms (a form of seizures)
§ Lesions or "lacunae" of the retina of the eye that are very specific to this disorder
§ Other types of defects of the brain such as microcephaly, (small brain); enlarged ventricles; or porencephalic cysts (a gap in the brain where there should be healthy brain tissue)
Children are most commonly identified with Aicardi Syndrome between the ages of three and five months. A significant number of these girls are products of normal births and seem to be developing normally until around the age of three months, when they begin to have infantile spasms. The onset of infantile spasms at this age is due to closure of the final neural synapses in the brain, a stage of normal brain development. The known age range of affected children is from birth to the late forties.
Treatment of Aicardi Syndrome primarily involves management of seizures and early/continuing intervention programs for developmental delays. Prognosis for these children varies, though all experience developmental delays, typically moderate to severe mental retardation. Published medical information in professional journals is somewhat limited and these articles are written by and for specialists. A limited bibliography of these journal articles can be found in our web site. Genetic research is ongoing into the cause of this disorder and the Aicardi Syndrome Foundation member families continue to be active participants in several research projects.
Services for the families include:
- Support
- Information
- Research
- Resources
- Events
- Adaptive equipment
Aicardi Syndrome is a rare genetic disorder affecting females, characterized by seizures, mental retardation, eye retinal lesions, and brain defects.
ASF is a non-profit 501 (c) (3) organization. Tax ID is E9957-3806-03
Board of Directors
WI Chapter
President:Terry J. Tveita Vice President:Julie A. Litza Secretary:Linda M. Tveita Treasurer:Jim Brick Officers:Pam E. Albrecht Dave Brazeau Katie M. Brick Cynthia M. Cooper Linda Harrison Wayne C. Litza Mary anne Mlodzik Sergeant at Arms: Warren C. Litza
