2018 CCDS Symposium

2018 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

Matthew Skelton, PhD

Nicola Longo, MD, PhD


Andreas Schulze, MD, FRCPC

Sarah Young, PhD, FACMG

Bruce Barshop, MD, PhD

Kim Cecil, PhD


Denise Morita, MD

Yiumo Chan, PhD

Gajja Salomons, PhD

Saadet Andrews, MD, PhD, FCCMG, FRCPC

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Aloïse Mabondzo, HDR

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Julia Nickerson, Attorney at Law

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Ton DeGrauw, MD, PhD


Judith Miller, PhD, MS

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Maurizio Balestrino, PhD


Alex Kuan, MD, PhD


Simona Bianconi, MD


LeAnn Peacock, MS-BCBA

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David M. Weiner, MD

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Aleksandra Bruchey, PhD

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Arjun Natesan, PhD


Thursday, July 26, 2018

Check-In and Badge Pick Up 6:30pm – 7:00 pm | Westin 3rd floor

Friday, July 27, 2018

Presentations 8:45am – 4:45pm | Westin 3rd Floor

Saturday, July 28, 2018

Presentations 8:45am – 4:45pm | Westin 3rd Floor

Sunday, July 29, 2018

Family Time from 10:00am – 12:00pm | Westin Poolside Garden


The Westin Austin Downtown

Place yourself in the heart of the city at The Westin Austin Downtown. Located one block away from the Austin Convention Center and steps from the 6th Street Entertainment District, our downtown Austin hotel is near the latest foodie hotspots, historic sites, legendary live music venues, eclectic shops and year-round outdoor fun.

Address: 310 E 5th St, Austin, TX 78701
Phone: (512) 391-2333

  • Symposium Room Rates: $189/night
  • Additional Discount Available to Families, Contact ACD for Discount Code
  • Rooms Available at This Rate Are Limited, Reserve Yours Today!


Collaborative Partners

Child Neurology Foundation

Kids Camp Overview

Join us for an exciting and enriching Kids Camp powered by KidSpark, an Austin area speech therapy provider. The camp will be offered during conference programming hours, 8:00 AM – 5:00 PM, with a break for lunch each day.  All age ranges and ability levels are encouraged to attend.  Fun will be led by experienced speech therapists, occupational therapists, and childcare providers. Sensory and toddler-friendly spaces will be designated within the camp environment to help meet the needs of all kids.

Kid's Spark -- Run by Maggie Kay Gibbs -- MS & CCC/SLP certified

Maggie “Kay” Gibbs loves making kids smile and teaching them to communicate, in that order. As an ASHA certified speech-language pathologist, Kay specializes in pediatric speech and language concerns as well as non-verbal communicators in need of assistive technology supports. Driven by a desire to offer services in a natural, spark-your-interest kind of way, Kay launched KidSpark after 9 years of professional practice. When she’s not helping your kids find their spark, she enjoys trying to convince her husband and 3 kids to be football fans.

For More Information, Contact:

Day 1 – Deep in the Heart of Texas

You’ve made the trip. Now let us give you a warm Texas welcome. In true Austin fashion, kids will create one of a kind bandanas, participate in rodeo-themed games, and enjoy Texas themed snacks and treats. Y’all, it’s going to be fun!

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 is Now Closed!

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 $25 each. Registration for Children is $5 each. All meals will be provided with registration- breakfast Friday through brunch Sunday. There is an additional fee for the Kids Camp and the hotel room.