2010 Aicardi Syndrome Family Conference
July 9-11, 2010
Bloomingdale, IL
Hilton Indian Lakes Resort
Registration has closed, but we may still have space available depending on cancellations.
The Aicardi Syndrome family conferences are a unique opportunity for families to come together to learn more about the syndrome, meet other Aicardi families, exchange ideas, and build networks of support together. Visit with old friends, establish new friendships, and put faces to the names of people with whom you have spoken online. Hear from experienced parents and professionals about topics of interest to families caring for an Aicardi child.
There is no registration fee for the conference. The Aicardi Syndrome Foundation will once again generously provide one hotel room per Aicardi child for Friday and Saturday night, dinner on Friday and Saturday night, and breakfast Saturday and Sunday morning. Extended family members are welcome, but are responsible for covering the cost of their own hotel rooms and meals. Volunteers will also be providing childcare during the conference.
Elliott Sherr, MD PhD (UCSF, San Francisco, CA) and Igna Van den Veyver (Baylor College of Medicine, Houston, TX have confirmed as keynote speakers. They will talk about the latest updates in Aicardi syndrome research.
The conference will also offer programming led by both professionals and experienced family members. For more information on the agenda and sessions offered over the weekend:
Tentative Agenda
Session Descriptions
(Please note that these proposed sessions may be subject to change.)
Some special highlights of this year’s conference include a Friday night outdoor BBQ (weather permitting) and the brand new Info Expo. The expo will be held on Sunday afternoon from 10:15am-1pm. Browse a trade show atmosphere of product vendors, therapists, and parents sharing useful products and ideas for every day care of your AS child.
Our program begins on Friday at 12:30pm and closes at 1:00 pm on Sunday. Families may choose to arrive prior to the conference, at their own expense, to meet and spend time together before the formal agenda begins.
National Patient Transport arranges free air transportation for medical and charitable needs, and may be a travel possibility for some families wishing to attend the conference. For more information about National Patient Transport and eligibility requirements please call NTPC directly at 800-296-1217 begin_of_the_skype_highlighting 800-296-1217 end_of_the_skype_highlighting begin_of_the_skype_highlighting 800-296-1217 end_of_the_skype_highlighting begin_of_the_skype_highlighting 800-296-1217 end_of_the_skype_highlighting or visit their website.
Many families come to their first conference with trepidation, worrying that it will be a sad, depressing, or frightening experience. They find, however a friendly and comfortable community of people with whom it is easy to share our common joys and challenges. Most families leave refreshed, energized, and excited about meeting so many other people who truly walk in their shoes. Pictures from the 2008 conference are here: 2008
Further information on the conference will be posted here and mailed to the email lists. Updates and special notices will be emailed directly to you once you have registered. Those without Internet access will receive information via letter or phone.
We extend our deep and sincere thanks to Al and Cindy Meo and the Board of Directors of the Aicardi Syndrome Foundation for their continued dedication on behalf of our children and their families. Their financial support makes this conference possible, at no cost to families beyond their travel expenses.
The Tenth Biennial Aicardi Syndrome Family Conference Planning Committee:
Jen Hughes – co-chair
Carrie Paup – co-chair
Chris Anders
Marcie Anders
Ande Glasmacher
Cindy Hodgeman
Ronda Parsons
Stuart Parsons
Katie Stanton
Kate Sullivan
Denise Park Parsons – consultant
Mary Ellen Costa - consultant
