Information about the 2018 Aicardi Syndrome Family Conference

Published on: February 28th, 2018, by Carrie Paup

Information about the 2018 Aicardi Syndrome Family Conference

The conference is a 3-day opportunity to meet and learn from other families and to attend sessions with speakers discussing topics of specific interest to our group. But most of all, we come together to have fun! All families of children with Aicardi Syndrome (AS) are welcome to attend. Please use the following link to register:

Conference Expenses:

The Aicardi Syndrome Foundation generously covers most of the conference costs for attending families. These costs are outlined below. The conference has no registration fee, but you must cover your own travel costs to reach the conference location. Parking is free at the hotel.

HOTEL ROOMS: Booking your hotel room is the responsibility of each Aicardi family. The Aicardi Syndrome Foundation will pay for ONE room (including tax) per AS child for THREE nights: Thursday (7/12/18), Friday (7/13/18) and Saturday (7/14/18). After you finish registering for the conference, please book your room(s) by using the link to the Hotel, the DoubleTree by Hilton, provided in your registration confirmation. This link will allow you to book within our block of rooms. If you prefer to call instead of using the website, you must request that your room be booked under Group Code ASC, in order for it to be covered by the Foundation. If you wish to stay additional nights at your own expense at The DoubleTree by Hilton, they will honor a special discounted rate of $108/night three days before and after the conference (7/9,7/10,7/11,7/15,7/16,7/17) on an “as-available” basis.

There is a limit of 2 ROOMS PER FAMILY at the group rate, so that all families have an opportunity to participate. If your family requires additional rooms, please notify the Conference Committee and ask to be put on the waiting list for any rooms remaining in the block after the registration cut-off date (June 11, 2018)

Hotel rooms in the block are available on a first come, first served basis, so we recommend that you do not wait to make your hotel reservations. Similarly, if you find that you are not able to attend the conference after you have registered, please notify the conference committee as soon as possible, so that the rooms can be used by other Aicardi families who may need rooms.

Please note that each individual family will be responsible for their own incidental charges (including but not limited to room service, movies, mini-bar, rollaways, cancellation or no-show penalties, room damage, and smoking). If you need to make special arrangements for checking in early, checking out late or any additional items for the weekend (ie: roll-away bed, crib, etc.) you will need to contact the hotel directly. Refrigerators will be available for all rooms at no charge. Roll-away beds and cribs will be supplied on a first-come, first served basis. There is a $20 per night fee for a rollaway bed.

The hotel will require a credit or debit card upon check-in, Cash is not an option for check in so please have a debit or credit card available. Families who reserve rooms within the block must notify the hotel before or at the time of check in if they plan to leave earlier than their scheduled departure. An early departure fee of $50.00 will be charged to the guest’s individual credit card for failure to notify the hotel in a timely manner. This fee will not be paid by the Aicardi Foundation.

Hotel Check-in Time: 3:00pm Hotel Check-out Time: 12:00 pm

Please note that if you are arriving on Thursday, 7/12 and your room is not ready, the hotel will be happy to store your baggage for you until your room is available.

MEALS: The Aicardi Syndrome Foundation will generously cover 6 meals for our Aicardi families during the conference. All meals are served buffet style. Meals include Thursday dinner, Friday brunch, Friday dinner, Saturday brunch, Saturday dinner, and Sunday breakfast.

•The Foundation will pay for conference meals for up to 4 adults per attending family. Please note that the 4 adults allowed include parents, grandparents, siblings 23 years and older, and any other relatives and/or non-relatives.

•The Foundation will pay for conference meals for all Aicardi Syndrome children and their siblings age 22 years or less. Any siblings 23 years or older will be counted as one of the 4 adults in your group.

•Any extra (non-sibling) children or adults beyond the 4 adults will incur the following meal surcharge fees. Please note that children 3 & under eat free.

Thursday Dinner: $28 per adult (12 & up) $14 per child (4-11)

Friday Brunch: $26 per adult (12 & up) $13 per child (4-11)

Friday Dinner: $31 per adult (12 & up) $15.50 per child (4-11)

Saturday Brunch $26 per adult (12 & up) $13 per child (4-11)

Saturday Dinner: $31 per adult (12 & up) $15.50 per child (4-11)

Sunday Breakfast: $26 per adult (12 & up) $13 per child (4-11)

MEAL SURCHARGES: The conference committee will contact you after you register with information and/or the total amount due on your meal surcharges. Payment for the meal surcharge(s) should be received by June 12, 2018. A cashier’s check or money order should be made payable to The Doubletree by Hilton and mailed to: Cindy Hodgeman, 3127 Forest Rdg., Madison, WI 53704.

If you have any questions about anything surrounding the conference, please feel free to contact our conference committee at



The Aicardi Syndrome Family Conference is about sharing our joys, victories and special moments. One way we do this is with a celebratory slide show. It is a chance to share with each other what our girls and their families have been doing. Great photos—set to wonderful music—shown at a general session during the conference. We would love to include pictures of your girl in activities, highlights or noteworthy moments of the past two years. Whether you can attend the conference or not, you are invited to send in your photos to be included in the “family slide show”. Julie and James Wright will be collecting these photos and working to make this photo montage as memorable as past ones. If you would like to have your child included, please submit 1-5 photos with an ideal minimum resolution of 1920×1080 or 608×1080 for vertical shots to Larger photos are welcome and can be uploaded with prior arrangement. Pictures can include photos of your Aicardi child smiling, photos with siblings/family, photos of your Aicardi child doing something special or unexpected. A description for each photo with the names of all persons in the photo and location of the photo and any additional information would be helpful as well. Please submit your photos no later than June 9, 2018.

Photos, questions and upload arrangement requests can be emailed to:
Please include the subject line: 2018SLIDESHOW

Memorial Table:
If you would like to have your Aicardi Angel’s photo included on the Memorial Table at the conference, please send a photo and your child’s first and last name to Jen Jen Thill, who will be coordinating this table.

Photos can be emailed to:
Please include the subject line: MEMORIAL TABLE