2024 CCDS Scientific + Patient Symposium

2024 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 learn 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 “Champions for a Cure.”

Champions for a Cure Gala

The 2024 CCDS Scientific + Patient Symposium culminates with a special celebration for our community. Plan to join us for a fun and elegant evening of entertainment, delicious food and drinks, and a special awards ceremony. All dress codes are welcome—from black tie to business casual to kids dressed for comfort.

  • Symposium registration includes one gala ticket.
  • CCDS family registration includes one gala ticket per person in the household.
  • Additional gala tickets may be purchased separately.

Symposium Dates & Schedule

June 29 & 30, 2024

Talks will be presented all day June 29 & 30. We recommend arriving June 28 or earlier and departing July 1 or later.

Kids Camp child care available Saturday & Sunday

All Abilities Kids Camp with activities for all ages will be provided 8AM-5PM.

Symposium Theme: “Champions for a Cure”

Anticipated sessions include:

  • Newborn Screening for Creatine Deficiencies
  • Biology of cerebral creatine deficiency syndromes
  • Advances in Therapeutic Development for CCDS
  • Gene Therapy Approaches for CCDS
  • Prevalence & Clinical Features of CCDS patients
  • Parent Panel on the Impacts of CCDS
  • And more!

Daily Schedule*

*Schedule is subject to change.  A detailed schedule will be available in May 2024.

Friday, June 28th 2024

4:00 – 7:00 PM Check-in and Registration

4:30 – 6:00 PM Pre-Symposium Session

Dinner on your own this evening

Saturday, June 29th 2024

7:00 – 8:45 AM Breakfast and Kids Camp drop off

8:45 – 12:30 PM Symposium Presentations

12:30 – 1:30PM Lunch

1:30 – 5:15 PM Symposium Presentations

5:30 – 7:00 PM Poster Session and Refreshments

6:30 – 9:00 PM CCDS Patient Celebration Dinner

Sunday, June 30th 2024

7:00 – 8:45 AM Breakfast and Kids Camp drop off

8:45 – 12:30 Symposium Presentations

12:30 – 1:30 PM Lunch

1:30 – 5:00 PM Symposium Presentations

6:00 – 10:00 PM Champions for a Cure Gala and Awards Dinner

Registration Information

Important Dates:

February 14: Registration opens, early-bird rates available

March 15: Last day for early-bird registration discount!

May 28: Final registration deadline

May 28: Last day to reserve a room at the Little America Hotel with the ACD Symposium rate

Attendance Options

Registration is available only for in-person attendance at this time. Speaker sessions will be recorded and posted to ACD’s YouTube Channel.

Accommodations & Travel

Little America Hotel

500 Main St, Salt Lake City, UT 84101

ACD Hotel Room Block

Reserve your room today by using this reservation link or call the hotel directly at +1-800-437-5288 and request the “Association for Creatine Deficiencies” room block.

There are a limited number of adjoining rooms. If you are in need of connecting rooms, or special accommodations, please call the hotel to ensure those requests are possible and are noted properly.

Symposium registration does not include a hotel room. Attendees are responsible for arranging their lodging. Please stay at the Little America, in our hotel block. Filling our block of rooms allows us to host the symposium at this hotel. Additionally, our block is in the main building, in the larger, nicer rooms at a negotiated discount. We believe you will enjoy this hotel!

Travel

Transportation between the airport and hotel are to be arranged by the participant. The hotel does not provide a shuttle.

SLC is the nearest airport. We recommend either using a taxi, rideshare app, or the train “TRAX”. The drive from the airport to the hotel is approximately 10 minutes.

Delta Air Lines is pleased to offer special discounts for Association for Creatine Deficiencies

Please click here to book your flights.

You may also call Delta Meeting Network® at 1.800.328.1111* Monday–Friday, 8:00 a.m. – 6:30 p.m. (EST) and refer to Meeting Event Code  NY39T
*Please note there is not a service fee for reservations booked and ticketed via our reservation
800 number.

To use TRAX, come out of the airport on the “ground level” and walk east (towards the mountains), past Door 1A, to the TRAX station and ticket machine. The cost is $2.50 per person for Trax tickets. You’ll be taking the “Green Line” to the Courthouse stop then walking less than a block to the Little America. Click here for the Trax Green Line Schedule.

fNIRS Study

A limited number of appointments will be available for CCDS patients to participate in fNIRS research on-site from June 28-July1. To learn more about fNIRS, you may view the recent meeting at Boston Children’s Hospital here. Information on how to sign up will be posted soon.

Speaker and Poster Abstract Submissions

Deadline extended: Abstract submissions will be accepted until May 6, 2024.

Please email  for more info following abstract submission.

There is no fee to submit an abstract. However, all attendees and presenters will be required to register for the conference. Registration information is available here.

Symposium Committee

General Chair: Heidi Wallis

Scientific Track Organizer: Sangeetha Iyer

Conference Organizer: Kelsie Nolan

Caregiver Track Organizer: Celeste Graham, Randy Allen

Publicity Chair: Erin Coller

Finance Chair: Mikelle Law

Sponsorship Chair: Dan Coller

Conference Products: Kim Tuminello

Social Media: Emily Wolfram

Frequently Asked Questions

Can I bring my kids? Will there be childcare?

Yes! The whole CCDS family is invited and encouraged to come to the 2024 CCDS Scientific + Patient Symposium. We will have Kids Camp running during Saturday and Sunday events. When you register, you can add your children’s names and ages and sign them up for Kids Camp. Both CCDS patients and siblings are welcome to attend Kids Camp.

 

Can I bring a caregiver for my CCDS family member?

Yes, caregivers are welcome. If they will be attending Kids Camp with your child, you can include them in your CCDS family registration fee.

 

Can I bring other family members?

CCDS Family registration is for one household only. Extended family members are welcome to attend under an additional CCDS Family registration.

 

Where should I stay?

Please plan to stay at the Little America Hotel. ACD has arranged a discounted Symposium rate for all attendees. To make a reservation with the Symposium rate, click here.

 

Is food included?

Yes, registration includes all meals from breakfast Saturday through dinner Sunday. The only exception is the “Lunch and Learn” registration which only includes lunches.

 

Will the sessions be recorded?

Yes, speaker sessions will be recorded and posted on ACD’s YouTube Channel. *Some recordings may be unavailable, depending on the speaker’s preferences.

 

Is there a virtual attendance option?

There is no option to attend virtually at this time.

 

Have additional questions? 

Email Kelsie Nolan at kelsie@creatineinfo.org.

Cancellation Policy
Symposium registration is not refundable.
Changes, requests, or cancellations of hotel room should be directed to Little America.
In the event the Symposium is cancelled due to unforeseeable circumstances such as a natural disaster or public health epidemic, ACD will refund registration fees, but will not be held accountable for any other costs incurred such as non-refundable airline tickets, etc. We recommend purchasing travel insurance to protect yourself from such a situation.