2015 conference – Orlando

 

orlando logoOur next Glut Deficiency conference will be in July 2015 in Orlando, Florida.  Please find additional information and links below.  We hope to see all of you there as we come together for unique opportunities to meet, share, and learn in Disney World!

Please contact info@g1dfoundation.org for any additional questions, and please be sure to keep checking our website, newsletters, and facebook page for conference planning updates.

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Registration Information:

register now

There are significant discounts for those who register early!  July 5th (2014)  is the first cutoff date for registration discounts and prices will increase in stages leading up to the conference.

Family Registration Pricing

registration pricingRegistration includes access to all sessions, noon meals (2), evening social activities, children’s activity room, and exhibit areas.

Please register in advance as there will be no on-site registration available.

Many states offer families financial assistance to attend educational events through their Council on Developmental Disabilities.   Program requirements, qualifications, and available funding differ from state to state, but it is a great resource to investigate.  We have compiled a list of each state’s Council on Developmental Disabilities website:  State Conference Assistance.

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Conference Program:

We will have a family program on July 6th and 7th followed by a professional program on July 8th at the Disney Contemporary Resort at Walt Disney World in Lake Buena Vista, Florida.

Family Program:    register now

Family Preliminary Agenda

Monday, July 6th:   morning cooking sessions, afternoon program, evening social
Tuesday, July 7th:  full day program, evening social

  • mix of whole group presentations, breakouts sessions, and meet the expert opportunities
  • presentations, resources, and information geared to family caregivers

Professional Program:  more information

Professional Meeting Brochure

Professional Preliminary Agenda

Wednesday, July 8th:  full day program

  • mix of whole group presentations, breakout sessions, and roundtable discussions
  • presentations, resources, and information geared to professionals with a target audience of pediatric and adult neurologists, dietitians, pediatricians, therapists, and researchers interested in Glut1 Deficiency
  • clinical trial panel session planned for Tuesday evening, July 7th (joint professional and family session)

We will plan a Glut1 Deficiency Day at the Magic Kingdom on Thursday, July 9th for all who are able and interested to join.  We will share more details as the date gets closer, but plans will likely include wearing special awareness t-shirts and meeting up as a group to enjoy the parade or another special event in the park.
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Agenda:

There will be exciting opportunities to enhance both the family and professional programs with overlapping presenters drawn from a global array of researchers and clinicians working to help the Glut1 Deficiency community.

The formal agenda is being developed and will be shared in various stages as plans move along.  In the meantime, we will share confirmed speakers and topics below as plans take shape.

Family Program Preliminary Agenda     

(find professional program information here)

Confirmed Speakers:
Stacey Bessone, RD, LD/N - All Children’s Hospital
Chef Neil - medical diet chef
Dr. Norma Conner, PhD, RN - University of Central Florida
Dr. Dominic D’Agostino – University of South Florida
Dr. Darryl De Vivo – Columbia University Medical Center
Kris Engelstad – Columbia University Medical Center
Ana Hernandez - Children’s Medical Center Dallas
Dr. Jörg Klepper - Aschaffenburg Children’s Hospital (Germany)
Dr. Eric Kossoff - Johns Hopkins Hospital
Dawn Martenz – KetoCook.com
Dr. Juan Pascual – UT Southwestern Medical Center
Dr. Raffaele Pilla – University of Salerno (Italy)
Prof. Ingrid Scheffer - University of Melbourne (Australia)
Dr. Peter Stavinoha - UT Southwestern Medical Center
Prof. Pierangelo Veggiotti - University of Pavia (Italy), Italian Glut1 Association
Beth Zupec-Kania, RDN, CD – The Charlie Foundation
Glut1 Deficiency Parent Presenters Darla Sims and Jennifer Fitzhugh
Emma Williams – Matthew’s Friends

Whole Group Presentation Topics:
Glut1 Deficiency – Yesterday, Today, and Tomorrow
Clinical Overview of Glut1 Deficiency – Signs, Symptoms, Diagnosis, Treatments
Global Research Updates
Foundation Research Grant Recipient Updates
Advances in the Ketogenic Diet
Clinical Trial Panel Discussion – joint session with professional attendees


Breakout Session Topics:
Ketogenic Diet Variations and Glut1 Deficiency
Ketogenic Diet Best Practices in Glut1 Deficiency
Healthy Keto Cooking:  Making the Most of Meals
Nutrition Best Practices for Non-Keto Patients
Caring for the Caregivers and Other Family Members
Glut1 101:  Basic History and Overview
Glut1 Deficiency in Early Childhood
Glut1 Deficiency in Adolescence and Adulthood
Navigating the School System:  A Guide for Parents
Strategies That Work:  Home, School, and Beyond
Special Needs Transitions Into Adulthood
Disability Rights: School, Employment, Services, Programs
Genetic Considerations
Cooking Demonstrations
Family Diet Support

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There are no plans for webcasts or video recordings from the conference.
There will be no on-site registration available, so please register in advance.

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Meals:

Adult conference attendees will be provided with two noon meal buffets.
Children will be provided with two meal passes for the Contempo Cafe on property.

A hospitality suite will be available with a complimentary assortment of staple keto foods, condiments, drinks, and scales so that families may build their own keto meals on site.  The suite also has a full kitchen which will be available for use throughout the family conference program.  All guest rooms at the Contemporary also have mini refrigerators.

Please visit the registration page for more information.

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 Children’s Activity Room/Child Care:

With growing numbers, varied needs, no local host family, and increasing liability concerns, we have opted with this conference to follow the lead of other similar groups and not provide direct child supervision during the conference sessions.

We will have a children’s activity room available throughout the entire family conference with games, puzzles, craft supplies, movies, and perhaps a few structured activities.

There will be no direct supervision and families will need to provide their own if needed.  Supervision options could include a relative, friend, or sibling of responsible age.  Disney also provides third party child care services for those who may be interested (more info to come).

There will be no registration fee for a family provided supervisor unless meals are requested.  Please see the registration page for options.

We will provide evening social events focused on the children for the treasured opportunities to meet and spend time together as a group.

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Rooming and Transportation:

The conference location is the Disney Contemporary Resort.  It is located next to the Magic Kingdom with several options for access – it is a short easy walk, you can catch the monorail that runs through the middle of the resort hotel, or you can catch a ferry across Bay Lake from the dock in back.

You can also ride the free Disney bus system from the resort to all four Disney theme parks, the two water parks, and Downtown Disney.  All forms of Disney transportation are wheelchair accessible and most accommodate scooters.   Our conference planning partner, Magical Vacation Planner, can assist with scooter, stroller, and wheelchair rentals if needed and arrange for them to be delivered and picked up directly at the resort.

Staying at the resort gives guests access to free airport transportation from Orlando International, free parking, and free wi-fi.    There are also two on-site gift shops, two pools (one with handicapped access), and a beach area on the adjacent lake.

Rooms at the Disney Contemporary Resort are available at a special discount conference rate of $249 per night plus tax.  This special rate can be extended for three days prior to the conference and for three days after its completion.

Conference attendees must stay on Disney property and accommodations must be reserved through our Disney partner, Magical Vacation Planner, so that rooms can be counted towards our rooming block minimum requirements as negotiated in our contract.  While we highly encourage attendees to stay at the conference headquarters -Contemporary Resort, we do realize there may be special circumstances where another Disney property may suit needs better.  Magical Vacation Planner will be able to help investigate other options on a case by case basis.

Magical Vacation Planner will have an online process for requesting room reservations and they will also be able to help arrange vacation park passes at discount conference rates.  Their services are free and they can accept multiple payments over time.   Find out more about how this works by visiting the Magical Vacation Planner information page.

Conference attendees will be required to complete the registration process through the Glut1 Deficiency Foundation first before any room accommodations or vacation packages can be reserved.  You will receive an automated e-receipt once you’ve registered for the conference, and it will serve as your authorization to work with Magical Vacation Planner for special discount room and park pass pricing.

For those booking airline tickets or rental cars, you might want to consider using Expedia through our GoodShop program – 4% will be donated back to the Glut1 Deficiency Foundation!  Travelocity also offers a 3.5% donation through GoodShop.

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Special Needs:

Disney is very accommodating to guests with special needs, both in the parks and at the resorts.  Please visit the Disney Accessibility FAQ for more information.  Magical Vacation Planner will also be able to assist with wheelchair, stroller, and scooter rentals if needed and can arrange to have them delivered to the Contemporary.

For meals outside of the conference offerings, you can request accommodations based on special dietary needs.  Please visit Disney’s Special Dietary Requests page to learn more.

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More Information:

Magical Vacation Planner rooming and park pass information
Professional Program
Exhibitor Opportunities