conference...



CONFERENCE AGENDA TOPICS MAY INCLUDE:

• Applied Behavior Analysis

• Brain and Tissue Bank Presentation Questions

• Science Behind 22q13

• Transitioning For Older Children

• Steve Shaw Study Results

• Siblings Program

• Seizure Discussion

• Legal Issues

• IEP Information

• Communication Presentation

• Issue Based Discussions

• Sessions for Mom & Dad

• Research Updates

• Medical Discussion

• Committee & Board Reports

• Blood Draws by the Staff of Greenwood Genetic Center

• and much, much more!
Official 22q13 Deletion Syndrome Conference Information
Thursday July 24, 2008 - Sunday July 27, 2008

Embassy Suites Hotel Greenville Golf Resort & Conference Center
670 Verdae Boulevard
Greenville, South Carolina 29607, USA

Welcome to the Official 2008 22q13 Deletion Foundation Conference site serving families with Phelan-McDermid Syndrome. All the information regarding the 2008 conference is contained here, so please take your time and read this page. Located here are the necessary links to the conference registration form, the childcare registration form, and the financial assistance application. These forms will register you and your family to attend the conference programs being held in Greenville, South Carolina at the Embassy Suites Hotel.

About this Conference:
The conference is for families, friends or caregivers with, or who knows an individual diagnosed with Deletion 22q13/Phelan-McDermid Syndrome. The conference is put together and run by parents in the 22q13 Deletion Support Group.
Conference Schedule:
  • Thursday, July 24th
    Registration for the conference will begin. There will be an informal get-together in the atrium area in the evening.
  • Friday, July 25th
    Registration will continue and the conference starts at 9:00 am Friday. Lunch will be provided as part of the conference and the conference program will run until approximately 5:00 pm Friday.
  • Saturday, July 26th
    The conference program will begin again at 9:00 am and include lunch, with the day concluding around 5:00 pm. A group dinner is planned for Saturday night, followed by outdoor games and fun (weather permitting).
  • Sunday, July 27th
    The conference program concludes with a Sunday session from 9:00 am until approximately noon.


Conference Costs:
  • Cost for adults attending the daily conference programs is $50 per adult.
  • Cost for siblings (age 3 and up) and for caregivers attending meals, but not daily conference programs are $25 per person.
  • Individuals diagnosed with Phelan-McDermid Syndrome and any children under the age of two, are complimentary.
  • The conference registration fees are used to help offset the cost of program materials and meals.
  • Attendees will be provided lunch on Friday, and a lunch and dinner on Saturday. The Embassy Suites provides a full-course breakfast, which is included in your room rate.
  • Please note, registration fees do NOT cover hotel room costs and all attendees will responsible for their dinner on Friday night.
Conference Registration:

To register for the 22q13 Deletion Foundation Conference click below. Please complete the registration form ASAP. After completing the conference and/or child care registration form, a confirmation email will be sent to the email address supplied in the respective form. The confirmation email is not immediate and you may not receive a reply for a day or two.

Please note: Contact your local ARC to inquire about Conference Registration Reimbursements, along with other conference related fees. Most ARC offices will have funding assistance for conference attendance. CLICK HERE to find your local chapter.
ChildCare Options:

We strongly encourage families to bring their own childcare provider with them to the conference. Due to a very generous grant from the Zvejnieks Foundation, 22q13 Deletion Foundation will be able to provide childcare services to a very limited number of individuals at no cost. Slots will be awarded via a lottery system. We would like to thank the Zvejnieks Foundation for their generous support!

Child care registration for our 2008 conference ended June 1st, 2008. Howerver, you can ask to be placed on the waiting list by sending an email to info@22q13.org. Please include your Family's name, Diagnosed's name, contact information (email, phone, address) and number of children for child care.

Childcare will be provided during the following times: Friday and Saturday 8:45 am - 5:15 pm and Sunday 8:45 am - Noon. Please note, no childcare will be provided during lunch Friday and Saturday.


What can I expect to learn at this conference?

This unique conference allows Phelan-McDermid Syndrome families from all over the world to come together. You can share ideas and success stories on educational, therapy and family issues. You may also form new relationships with other families for continued support.

What is the intent of the conference programs?

The conference programs are geared toward parents and adults with a family member with Phelan-McDermid Syndrome.

Embassy Suites Reservations & Check In:

Most families will want to check into the hotel on Thursday, July 24th and depart on either Sunday the 27th or Monday morning, July 28th.

We have set aside a block of rooms at the special group rate of $119 per night, plus tax. Please book reservations through the link below or by calling the hotel group reservations department at 1-800-EMBASSY (1-800-362-2779). Ask for the 22q13 Deletion Group rate.
We are obligated to pay for a certain number of rooms at the group rate so be sure to book from our block by June 28th. Once these rooms are sold out, the rate is subject to go up.

Embassy Suites Hotel Greenville is a full-service resort on the Verdae Greens Golf Course. Each suite is beautifully decorated with a private bedroom with two double beds, a spacious living room with a full-size sleeper sofa and a well-lighted dining/work table.
All suites are fully equipped with the following amenities†:

• two televisions

• wet bar area

• two telephones with data ports

• stocked coffee maker

• high-speed internet

• iron

• refrigerator

• ironing board

• microwave oven

• hair dryer
† Some amenities may involve additional fees.
Please contact Embassy Suites 1.800.EMBASSY, for more details.

A full buffet and cooked-to-order breakfast each morning is included in the room rate, as well as a two-hour cocktail reception each evening. Local and airport shuttle service to Spartanburg - Greenville airport, a copy of the USA Today newspaper and parking are all-complimentary.

If you have any questions regarding the conference registration, childcare registration or the financial assistance application, please send an email to info@22q13.org.



Sincerely,
2008 22q13 Deletion Foundation Conference Planners

Last Updated 6/1/2008
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