2012 Aicardi Syndrome Family Conference
Friday, July 20, 2012 - Sunday, July 22, 2012
Millennium Hotel St. Louis
200 South 4th Street
St. Louis, MO 63012
(map)
Registration is not yet open. Please check back in early 2012.
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.
The conference will offer programming led by both professionals and experienced family members. The agenda & sessions are still being organized at this time.
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 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.
Please feel free to contact the conference committee with any questions you might have at the following email address: aicardi.conference@gmail.com
The Eleventh Biennial Aicardi Syndrome Family Conference Planning Committee:
Ronda Parsons--Co-Chair
Carrie Paup--Co-Chair
Nicole Babinec
Daniel Forester
Kim Forester
Brooke Hardin
Stuart Parsons
Katie Stanton
Jodi Tolman
Jennifer Hughes--Childcare Coordinator
Denise Park-Parsons--Consultant
