ACD on the Road
ACD attends many events throughout the year. From presenting talks and posters at medical conferences to setting up an exhibit booth and sharing CCDS information we’re constantly sharing the message of CCDS awareness and research and have been since 2012!
Under Construction
2016 Exhibit at the Child Neurology Society (CNS)
October 26, 2016 – October 29, 2016
Exhibit at the Child Neurology Society (CNS) Annual Meeting 2016
Vancouver, BC
October 26 – 29, 2016
The Child Neurology Society (CNS) 2016 meeting was an excellent opportunity to collaborate with industry, clinicians, and patient advocates. ACD’s attendees discussed the importance of continued education around neurodevelopmental disorders and we were honored with the opportunity to attend the Child Neurology Foundation’s CAB meeting, comprised of a diverse group of innovators interested in changing the future of medicine. The voice of the patient advocate groups are resonating with both industry and clinicians, and it is becoming very apparent that success will depend on bringing these three groups together to help improve the diagnostic process, as well as the future of research and drug development.
2023 SERGG GAMT Webinar
GAMT Webinar
July 28, 2023 @ 12:00 pm – 1:15 pm EDT
2024 Champions for a Cure Gala
June 30, 2024 • 6:00 – 10:00 PM
Little America Hotel, 500 Main St, Salt Lake City, UT
Join us for dinner & dancing!
Attendees will be from our patient community, CCDS research, clinical care, government policy and the pharmaceutical industry.
Proceeds of the Champions for a Cure Gala will benefit Association for Creatine Deficiencies to support education, newborn screening and diagnostic advocacy, family support and research for Cerebral Creatine Deficiency Syndromes.
2023 Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting on CCDS
This meeting was held January 24, 2023. Learn more, view the recording, and read the Voice of the Patient Report at this link.
2019 CCDS Workshop at SIMD
Cerebral Creatine Deficiency Syndrome (CCDS) Workshop at SIMD
Co-Located with SIMD, Main Conference Hall Hyatt Regency, Bellevue, Washington Monday, April 8, 2019
Researchers and medical professionals presented state-of-the-art research on Creatine Deficiencies with the goal of facilitating collaboration across different medical domains. A specific goal of the workshop was to present and reach consensus on newly developed Recommended Treatment Protocols for all three Cerebral Creatine Deficiency Syndromes: CTD, GAMT, and AGAT.
Organizing Committee
Dr. Saadet Andrews, Hospital for Sick Children, Toronto Dr. Bruce Barshop, UC San Diego Dr. Ton DeGrauw, Emory University Dr. Nicola Longo, University of Utah Dr. J. Lawrence Merritt, Seattle Children’s Dr. Andreas Schulze, Hospital for Sick Children, Toronto Laura Trutoiu, PhD, Association for Creatine Deficiencies Dr. Klaas Wierenga, Mayo Clinic
Program (1:30–5:30)
- Introduction of Participants
- Goals of the Meeting
- Natural History and Current Therapy for AGAT Deficiency
- Proposed Therapy for AGAT Deficiency
- Proposed Therapy for CTD Deficiency
- Proposed Therapy for GAMT Deficiency
Coffee Break
- Natural History and Current Therapy for Creatine Transporter Deficiency
- Proposed Therapy for Creatine Transporter Deficiency
- Consensus on Therapy Recommendations
- Next Steps: Plans for Publishing Treatment Consensus
Workshop Sponsors & Partners
YouTube embed: https://www.youtube.com/embed/1VbJUHWhOqs
2019 CCDS Conference in Rotterdam
Cerebral Creatine Deficiency Syndrome (CCDS) Workshop following SSIEM September 6 & 7, 2019 in Rotterdam
Dr Gajja Salomons, Xtraordinaire, and ACD have the pleasure to host the 2019 Symposium on Cerebral Creatine Deficiency Syndromes “CCDS” in Rotterdam on Friday, September 6 and Saturday, September 7.
This symposium offered a unique opportunity for the scientific and medical communities, the experts, and the patients’ families to meet and exchange on CCDS.
With a multidisciplinary approach it gave attendees the opportunity to discuss the recent research data, future developments, and more importantly allow a privileged relationship between patient families, physicians, and scientists.
View the schedule in English here.