Chicago, IL - July 25-27, 2008

AHCF Family Meeting

The 2008 AHCF family meeting will be near Chicago Illinois on July 25th, 26th, and 27th at the Marriott Renaissance Chicago O'Hare Suites Hotel. A huge thank you to Vicky Platt for finding us this venue after much research and legwork. It should be perfect for our meeting.

Friday, July 25th -

The Swoboda team will be conducting physicals, blood draws, interviews, photos and videos. New patients wanting to be evaluated and participate in the research project, as well as, returning patients for follow up should schedule an appointment by emailing Dr. Matt Sweney or Dr. Sandra Reyna. (see below) The appointments take approximately 1 1/2 hrs. each. There are a limited number of discount hotel rooms set aside for arrivals on Thursday evening for families wishing to be seen Friday, so make your reservations early.

Saturday, July 26th -

Will be a full conference day. Dr. Swoboda will give us an overview of the research and clinical trials to date and the exciting direction the research will take over the next three years. Families will have a chance to meet the Research team including Dr. Matt Sweney a neurology resident that is working on AHC exclusively! We would like suggestions for other speakers and topics that cover what you most want to hear. Some of the suggestions so far are Behavior problems, IEP issues, Socializing, Medications and their varied effectiveness, Providing siblings a private time to share and vent with a professional, Guardianship and other Estate issues, After high school then what?, Fundraising for research etc...

Sunday, July 27th -

Will be a wrap up lasting until approximately noon trying to get in as many additional topics not covered on Saturday as possible with either small group discussions and/or dividing the room up and choosing which topic and speaker most interests you. During the conference the children will be in close proximity to their parents. There will be volunteers needed to monitor and help with activities. The Marriott has a pool, in house restaurant and fitness room. All of the rooms reserved for the Foundation have two double beds in the bedroom and a pullout couch in the living area. Parking is free for day attendees and a discounted rate of $8.00 from $20.00 for overnight guests. There is a block of rooms set aside for us at a discounted rate of $119.00 per night. I urge you to make your reservations early so that we know if we have to add to this block of rooms, otherwise the hotel will most certainly fill up and any late comers will have to pay upwards of $169.00-$189. 00 per night. Also, if we fill our block of rooms the Hotel will graciously let us have the meeting space for free, which would be a huge savings for the Foundation. If you click on this link http://marriott.com/chibr?groupCode=ahcahca&app=resvlink it takes you directly to the hotel reservations page and has our group code already inserted. Our GROUP CODE for our discount is ahcahca. You may also call for reservations at 1-773-380-9600 giving the group code over the phone.

Please also email Lynn Egan if you are going to attend so that we have our own accurate count. Questions and suggestions for topics for the conference itself should be directed to Sharon Ciccodicola at ciccodicola@comcast.net; Lynn Egan at laegan6@sbcglobal.net or Richard George at Richardgeorge@ameritech.net. For appointments, please contact Dr. Reyna at sreyna@genetics.utah.edu and Dr. Sweney at sweney@genetics.utah.edu .

Which brings me to the last thing I want to address: Many families do not have email capabilities and we also don't have correct emails for some other families, so in order to reach as many people as possible there will be a one time postal mailing to those families we can't reach or that do not have access to email. In the future all correspondences including newsletters will be electronic to save time and money for research. Please help us out and send us any new or changed email addresses we may not have and also contact anyone you know that is not online with this information. We are trying to reach as many people as possible, as well as, update our mailing list.

Thanks, Sharon Ciccodicola Medical Liaison AHCF