2022 CCDS Symposium Registration

2022 CCDS Scientific + Patient Symposium

Join members of the CCDS scientific and medical community, as well as the Cerebral Creatine Deficiency Syndromes patient and family community at this important event. Professionals will be learning from families and patients, while also presenting their experience and knowledge of GAMT, CTD, and AGAT, allowing for a deeper understanding of CCDS and helping the research community and families as they are “Connecting for a Cure”.

Schedule Overview

Symposium short form agenda of speakers can be found here.

Long form program agenda, including bios and abstracts is here.

Saturday, June 25, 2022

Symposium Check-In 4PM-8PM

Dinner served 6-8PM *Sponsored by Ultragenyx

Sunday, June 26, 2022

Breakfast 7-8

CCDS Presentations 8-5

Dinner & Program 6-9

Monday, June 27, 2022

Breakfast 7-8

CCDS Presentations 8-5

Dinner & Program 6-9

Tuesday, June 28, 2022

Family Breakfast 8:00AM-9:30AM in The Cabin

Check Out 11AM

Family Pool Time 9AM-12PM


Free Child Care Sunday & Monday

All Abilities Day Camp 8AM-5PM

Choice of onsite activities (all ages) or archery, cycling, pickleball, or climbing at the National Ability Center (ages 4+)


Grand Summit Hotel

4000 Canyons Resort Drive, Park City, UT, U.S.A.

CCDS Families

During registration, choose “CCDS Family Accommodations.” Indicate the evenings you require accommodations and any needs such as “wheelchair access” or “two queen beds”.

ACD will reserve your room. You will check-in with a credit card and will be charged $100 per night during the conference (nights of June 25, 26, and 27) plus any incidental costs incurred. Any nights in addition to the conference will be at the full rate of $170 plus resort fee and taxes within three days before and after the conference. Nights beyond this will be at the hotel’s current offered rate.

Non-CCDS Families

During registration, choose “Accommodations: Other.” Instructions for contacting the hotel to reserve a room at the conference negotiated rates, will be displayed.


SLC is the nearest airport

Transfers between the airport and hotel are to be arranged by the participant. There is not a shuttle. The drive from the airport to the hotel is approximately 35 minutes.

Thank You to Our Sponsors!


Register Today!

Discount Codes

CreatineInfo Registry participants can receive a discounted registration! If you have submitted your PMO survey, you may earn a 25% discount. If you submit your genetic report, you may earn an additional 25% off. Email Emily at registry@creatineinfo.org to receive your coupon codes.

Cancellation Policy

ACD will follow all public health guidelines and laws. Depending on guidelines at the time of the conference, conference guests may be required to show proof of Covid vaccination and/or to wear a mask. In the event the Symposium is cancelled, ACD will provide registrants the option to request a registration fee refund or donate their fee to the organization. Hotel rooms must be canceled up to 7 days prior to check-in to avoid a penalty. 

Speaker Abstract Submissions

Limited travel funds are available. Please email  for more info following abstract submission.

Symposium Committee

General Chair: Heidi Wallis

Program Chair: Laura Trutoiu

Conference Organizer: Faith Ochoa

Scientific Track Organizer: Sangeetha Iyer

Caregiver Track Organizer: Celeste Graham, Randy Allen

Publicity Chair: Erin Coller

Finance Chair: Dan Coller

Sponsorship Chair: Mikelle Law

Covid Travel Guidelines

Sponsorship Packages