Our biennial national family conference provides education and support to families of individuals with CdLS.
Attendees receive free head-to-toe consultations with experts from a range of medical and educational fields; attend workshops on legal concerns, educational issues and medical/behaviors challenges; and have opportunities to meet other families facing similar challenges.
Join us for the Cornelia de Lange Syndrome (CdLS) Foundation National Family Conference, June 23-26, 2016, in Orlando, FL. Attendees have an opportunity to gain knowledge on how to best care for their child and meet other families facing similar challenges. Individuals with CdLS receive free head-to-toe consultations with experts from a range of health and educational fields.
Not only will attendees be better equipped to face challenges throughout their children’s lives, but also they will leave with a sense of belonging. Events that help connect families include a gathering for grandparents, separate get-togethers for moms and dads, and a social hour for siblings ages eight and over.
Registration for conference is scheduled to open February 15, 2016. Information will be found on this page at that time.
The conference takes place at the DoubleTree by Hilton at Sea World (http://www.doubletreeorlandoseaworld.com), just 15 minutes from the Orlando International Airport. Amenities include three pools, kids lounge with game area, exercise room, miniature golf course and putting green, free in-room Wi-Fi, free parking, and on-site restaurants. All rooms are equipped with a refrigerator.
The CdLS Foundation conference rate is $112/night plus tax. This rate is only for people who are registered for conference. If you are not registered for conference by May 27 you will be removed from the room block and will be responsible for paying the current hotel room rate. The discounted room block rate is available until May 23, or until it sells out, whichever comes first.
Hotel reservations for conference are now being accepted. Please use our Group Reservation Web page to make your reservation online. If you plan to call the hotel to book (407.352.1100), you must reference the CdLS Foundation National Family Conference in order to receive the discounted room rate.
You must be registered to attend the conference. The early bird registration deadline is March 25; the final deadline is May 27. The registration fee covers all workshops and sessions, medical and educational consultations, and the following meals: Thursday night ice cream social; Friday breakfast, lunch and dinner; Saturday breakfast, lunch and dinner; and Sunday continental breakfast. There is no registration charge for the person with CdLS. Registration does not include travel, the hotel room or sibling childcare/excursions.
SPECIAL TYPES OF REGISTRATION:
Childcare Provider: Available to individuals attending conference solely to provide childcare (maximum of two per family). If you take advantage of this discounted option, childcare for the person with CdLS is not available.
Available to professionals from such fields as medicine, education and more who wish to attend Friday or Saturday general sessions and workshops. (This is not the same as the Scientific or Educational Symposia.)
FIRST-TIME ATTENDEES SCHOLARSHIPS:
A limited number of scholarships are offered to families attending their first conference. Each scholarship covers the cost of registration only for a maximum of two people. The scholarship does not cover travel, hotel or the sibling childcare programs. To apply for a scholarship, select the option under Special Requests on the registration form. Scholarships are awarded on a first-come, first-served basis. You will receive notice of the status of your request within two weeks. Pre-payment of registration fees is not necessary if you apply for a scholarship. Deadline is March 25.
Scholarships are available to cover the registration costs for up to two grandparents within the same family or two single grandparents. The recipients are randomly selected March 28. Deadline is March 25. To apply for a scholarship, select the option under Special Requests on the registration form.
Many community organizations are responsive to the needs of families wanting to attend conference. We urge families to seek financial support through your state ARC, local school systems, social service agencies, national/state disability programs, regional businesses, and/or service clubs, emphasizing the opportunity for the person with CdLS to be seen by a team of CdLS experts. Some Medical Spending Accounts cover registration. Check back here periodically for links and resources.
To help families budget their travel to the conference, we’ve created a budget worksheet to help with planning. Click here to download.
The Foundation has secured discount admission tickets to the following local amusement parks: SeaWorld, Sea World Aquatica, SeaWorld Discovery Cove