CCDS Symposium Registration

2020 CCDS Scientific + Patient Symposium Registration


This conference is intended for members of the scientific and medical community, as well as the Cerebral Creatine Deficiency Syndromes (CCDS) patient and family community. Professionals will learn from families and patients while also presenting their experience and knowledge of GAMT, CTD, and AGAT disorders, allowing for a deeper understanding of CCDS in the medical community and helping pave the way for innovation through collaboration.

Featured Speakers

Speakers will be selected and announced by January 2020. Selections will be based on availability, active CCDS related research, and interest in the field of CCDS and supporting topics.


Thursday, July 30, 2020

Check-In, Badge Pick Up & hors d’oeuvres 6:30pm – 7:00 pm | Kokopelli Lobby

Friday, July 31, 2020

Presentations 8:45am – 4:45pm | Kokopelli Ballrooms I & II

Buffet Dinner and Fun 6:30pm – 9:00pm

Saturday, August 1, 2020

Presentations 8:45am – 4:45pm | Kokopelli Ballrooms I & II

Closing Banquet & Awards Ceremony 6:30pm

Sunday, August 2, 2020

Family Breakfast in the hotel 8:30am

CCDS Family Outing and farewells from 10:00am – 1:00pm | National Ability Center – Park City


The Grand Summit Hotel

Address: 4000 Canyons Resort Drive, Park City, UT
Phone: (888) 416-6195
Group ID: CY0ACD2
Group Name: Association for Creatine Deficiencies
Reservations specialists will be able to assist you through the reservations process at the number above.

*June 30, 2020 is the last day to make a reservation at the group rate. Please reserve your room as soon as possible due to the group block of rooms being limited in number.
**The full room balance is due upon check-in. Any changes or cancellations to your booking must be made 7 days prior to your arrival date.

Grand Summit Hotel is located on Park City Mountain Resort in the Canyons Village base, which is 4 miles from the Park City base, 5 miles from the Utah Olympic Park, and just over 30 minutes drive from the Salt Lake City International Airport. Hotel accommodations include free parking and a shuttle to Park City Main Street destinations.

Symposium Room Rates:

  • Standard Room: $170 + $20 resort fee/night, available the nights of July 27 – August 3.
  • ACD room subsidy available to CCDS families. Only applies to the evening of July 30, 31, and August 1. Contact ACD for details.
  • Rooms at this rate are limited. Please reserve yours today!

Upgraded Rooms Available:
1 bedroom suite $238 +$20 resort fee/night
2 bedroom suite $369 +$20 resort fee/night

Email for more information.


Symposium Sponsors will be announced in the coming months. Contact for sponsorship information.

Collaborative Partners

Child Neurology Foundation

Kids Camp Overview

Join us for an exciting and enriching Kids Camp run by the National Ability Center, a Park City Area nonprofit focused on recreation for individuals with disabilities. The camp will be offered during conference programming hours, 8:00 AM – 5:00 PM, with a break for family lunch each day.  All age ranges and ability levels are encouraged to attend.  The fun will be led by experienced staff. Sensory and toddler-friendly spaces will be designated within the camp environment to help meet the needs of all children. CCDS adults are also welcome to attend this camp. After registering, you will be contacted to complete a survey about additional needs your child may have.

Day 1 – Olympic Heroes

In true Park City fashion, kids will participate in olympic-themed games, take outings around the resort with staff, and enjoy snacks and treats. It’s going to be an Olympic Blast!

Day 2 – Imagine, Create, Invent  

Kids will have the opportunity to create unique art pieces, collaborate with friends on inventions, and use their imaginations across a variety of pretend play opportunities. There will even be a technology petting zoo to spark the interest of our older campers!

Conference Registration Will Be Opening Soon!

Physicians, Researchers, and Professionals

The registration fee for Professionals is $350 per person and includes attendance at all meetings and meals- breakfast Friday through dinner Saturday.

CCDS Families and Patients

The registration fee for Adult CCDS Family Members to attend the conference is $50 each. Registration for Children is $25 each. All meals will be provided with registration- breakfast Friday through breakfast Sunday. There is an additional $25 fee for the Kids Camp. Please reserve your hotel room as soon as possible to ensure availability. The ACD will subsidize $70 per night of CCDS families’ hotel room upon request. Please email for information and to request this subsidy. Subsidy only applies during the three nights of the symposium (July 30, 31, and August 1).