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CCDS Scientific + Patient Symposium 2021

June 26 @ 8:00 am - June 29 @ 5:00 pm MDT

$15 – $250

2020 Symposium Rescheduled

The ACD has been closely monitoring the spread of COVID-19 and working with our scientific medical advisors, in addition to following recommendations from the Centers for Disease Control (CDC) and World Health Organization (WHO), on precautions surrounding travel and large events. After careful consideration and at the advice of our scientific advisors, the ACD has decided in the best interest and health of all parties, to postpone the 2020 Scientific + Patient Symposium. We are saddened to have to come to this decision. Through careful planning and collaboration with the Grand Summit, Park City we are grateful to be able to reschedule our conference for June 26 – 29, 2021 (Tentative).

Will 2020 registrations roll over to 2021?

No. The ACD will be suspending the 2020 conference registration site and issuing refunds for all 2020 registrations to date. We will launch a new registration page for the 2021 conference in the coming months.

How will I know if I’ve been issued a refund for my 2020 Conference registration(s)?

If you have completed a 2020 conference registration, an ACD representative will be following up with you directly over the next week to issue a refund for your registration payment(s).

What do I need to do about my hotel reservation?

The Grand Summit, Park City will be canceling all existing hotel reservations. If you have not received a cancellation confirmation email, please contact the hotel directly to cancel your room(s). Reservations for 2021 will need to be booked at a later date.

Are there any alternative plans for a meeting in 2020?

We understand that there is a lot of momentum and information to share! The ACD is currently exploring options to host a two-day virtual event to take place this summer. We will be sending out more details and registration information for this remote option as they become available.


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.


Thursday, July 30, 2020

Check-In, Badge Pick Up & hors d’oeuvres 6:30pm – 8:00 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 pool time and farewells 10:00am-1:00pm


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 [email protected] for more information.


Symposium Sponsors will be announced in the coming months. Contact [email protected] for sponsorship information.

Collaborative Partners

Child Neurology Foundation

Kids Camp Overview


Hotel Camp Experience

We are excited to announce that KidSpark owner and speech pathologist, Kay Gibbs, will be organizing and directing our on-site kids’ camp for this year’s symposium. KidSpark, our camp provider from the 2018 CCDS Symposium in Austin, is making the trip to Utah to join us! Kids will enjoy our large play space filled with engaging toys, crafts, and activities as well as a separate technology space and sensory gym space to help meet the needs of all campers.

As a complement to the off-site activities available through the National Ability Center (NAC), this in-hotel camp experience will also be available Friday and Saturday during the conference.

NAC logo

Recreational Experiences for All Ability Levels

Conference attendees age 4 and older are invited to visit the National Ability Center’s ranch in 3 hour long sessions on Friday and Saturday. One-on-one assistance will be available for those who need it. NAC’s campus offers challenges and accommodations for all ability levels. Families signing up for Kids Camp will be contacted directly by NAC to confirm their interest in attending the NAC and which activities their child would be most interested in.

The NAC is located 15 minutes from the hotel. Transportation between the hotel and the NAC will be provided by a NAC vehicle operated by their trained staff. The NAC will be at the hotel during Thursday night registration to answer questions, discuss safety considerations, and plans for ensuring safety.

**The ACD will share contact information for any families signing up for Kids Camp with KidSpark in order to enable communication and confirmation of the attendees’ needs.

Conference Registration Is Now Open!

Physicians, Researchers, and Professionals

The registration fee for Professionals is $250 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 $30 each. Registration for Children is $15 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 [email protected] for information and to request this subsidy. Subsidy only applies during the three nights of the symposium (July 30, 31, and August 1).


June 26 @ 8:00 am
June 29 @ 5:00 pm
$15 – $250
Event Category:


The numbers below include tickets for this event already in your cart. Clicking "Get Tickets" will allow you to edit any existing attendee information as well as change ticket quantities.
Physicians, Researchers, and Professionals
$ 250.00
Postdoc Fellow, Trainee, Student
$ 100.00
CCDS Families and Patients -- Adult
$ 30.00
CCDS Families and Patients -- Kids
$ 15.00
CCDS Families and Patients -- Kids Camp
$ 25.00