News & Media Resources
CCDS News
The Association for Creatine Deficiencies (ACD) is dedicated to disseminating pertinent updates and developments concerning Cerebral Creatine Deficiency Syndromes (CCDS). Our news section provides timely information on advancements in research and organizational milestones. We invite you to explore these updates to stay informed about our ongoing efforts to improve the lives of those affected by CCDS and sign up for our newsletter to receive updates.
CCDS In The News
March 2, 2026
Check out the podcast here.
August 26, 2025
Oscar is inspiration behind Dunchurch fundraiser for people with rare disorder
July 23, 2025
MrBeast CEO and ‘Beast Games’ winner rally brand partners and rare disease support on Wall Street
Jeffrey Allen of Beast Games Season 1 Rings the Nasdaq Stock Market Closing Bell
July 17, 2025
A surgeon’s second calling: Gene therapy for the brain’s energy crisis
June 26, 2025
Boy with rare genetic disease is inspiration behind family fun morning in Dunchurch
June 8, 2025
Maaike (39) runs 68 kilometers for her sick son: ‘The most worrying thing for us is the future’
February 28, 2025
‘I don’t want others to star or walk away’: Rugby mum opens up about son’s rare disease
February 25, 2025
February 15, 2025
MrBeast’s Beast Games Winner Takes Home $10 Million
February 14, 2025
Amazon Prime’s ‘Beast Games’ winner Jeffrey Randall Allen on his ‘surreal’ reality TV run
Beast Games Winner Discusses Prize – Good Morning America
September 3, 2024
All Illinois newborns to be screened for genetic disorder, thanks to Oswego family
July 8, 2024
‘Emotional day’: Rugby fundraiser helps raise £3,000 in honour of boy with rare genetic disease
June 22, 2024
Dad Walks 68 Miles to Cure Sons Rare Brain Disease
June 15, 2024
Family rallies community to raise awareness and money for rare syndrome
June 14, 2024
June 13, 2024
This weekend: Walk for Strength raises awareness for Creatine Deficiency Disorder
June 7, 2024
Local Families “Walk For Strength” to Cure Rare Genetic Disorders
May 22, 2024
Genetic Testing Unlocks Family’s Future
March 6, 2024
Greenbrier County mom works to bring awareness to son’s ultra-rare genetic condition
February 29, 2024
Rare Disease Day: Greenbrier Co. family shares battle with GAMT
February 29, 2024
July 3, 2023
The City Journals -Walk for Strength raises funds to cure rare genetic disorders
June 8, 2023
WEAU 13 News Walk for Strength Interview
June 2023
RARE Revolution Magazine – Heidi Wallis
“Newborn Screening; the Invisible Health Programme”
June 2023
RARE Revolution Magazine – contributor: Heidi Wallis
“Health Disparities in Newborn Screening”
April 18, 2023
RARE Revolution Magazine – Heidi Wallis
“Patients Partners”
April 18, 2023
RARE Revolution Magazine – The Prescher Family’s Story
“The Balancing Act”
March 15, 2023
ARUP Laboratories Article on Creatine Deficiency Research Center
“ARUP Medical Directors Seek New Diagnostic Tools, Treatment for Creatine Transporter Deficiency”
February 16, 2023
ARUP Laboratories Newborn Screening Article
“Advocates for Nationwide Newborn Screening for GAMT Deficiency Celebrate Important Milestone”
December 24, 2022
“A Mondovi family works to raise funds and awareness for rare genetic disorder research”
September 1, 2022
Buffalo County News WFS Coverage
“‘Local ‘Walk for Strength’ takes in over $16,000 for CCDS”
August 15, 2022
WQOW WFS 2022 Coverage
“‘Walk for Strength’ to raise money to find cure for CTD”
July 2022
Heidi Wallis: The Role of Families in Advancing Newborn Screening (2022 SERN/SERGG Annual Meeting)
June 25, 2022
Presentation at PerkinElmer meeting by GAMT parent
“Why Newborn Screening is so Important – a Parents View”
June 8, 2022
“Researchers Report Gene Therapy May Correct Creatine Deficiency Disorder”
February 28, 2022
Comment from Rare Disease Groups to FDA
ACD joined with 41 other rare disease organizations and submitted a comment in response to the FDA’s draft document regarding the use of patient registries to support regulatory approval. In our comment, we shared our experiences with our patient registries and suggested ways regulators, patient organizations, and industry can work together to leverage the potential of real-world data (RWD) and translate it into real-world evidence (RWE) in support of research and regulatory approval of rare disease therapies.
February 9, 2022
Southeast Regional Genetics Network
“Pathway to Newborn Screening Facilitated by Collaborations with a Parent Organization A Case Scenario: GAMT Deficiency”
August 24, 2021
WBTV
“Walk for Strength raises funds, awareness to find cure for creatine deficiencies”
February 5, 2021
USA TODAY CCDS Story #6
“Speech delays may have a cause, genetic testing is recommended”
January 14, 2021
Global Genes
“Rare Leader: Heidi Wallis, President, Association for Creatine Deficiencies”
January 11, 2021
ARUP Laboratories
“ARUP – Developed Newborn Test Dramatically Changes Baby’s Life – But It Almost Didn’t Happen”
January 7, 2021
Utah Public Radio
“Utah Identifies Rare Disorder in Newborn Screening For First Time”
January 4, 2021
USA TODAY CCDS Story #5
“How a critical screening kept a little girl from a lifetime of disabilities”
December 30, 2020
KSL News Radio
“Newborn screening catches serious, but treatable, GAMT disease for the first time”
December 30, 2020
Utah Department of Health
“Newborn Screening in Utah Identifies First Baby Born with GAMT”
December 30, 2020
ABC4.com
“Utah DOH identifies first baby with inherited disorder that primarily affects brain, muscles”
November 30, 2020
USA TODAY CCDS Story #4
“A Mother’s Fight for Genetic Testing led to Help for her Babies”
November 4, 2020
USA TODAY CCDS Story #3
“Parents find the cause for their son’s speech delay with a genetic test”
September 30, 2020
USA TODAY CCDS Story #2
“Parents solve the diagnostic mystery for adopted son”
September 18, 2020
USA TODAY CCDS Story #1
“A simple heel prick screening changes children’s lives”
February 4, 2020
SAN DIEGO BUSINESS JOURNAL
“Carlsbad Nonprofit Awarded $450K Chan-Zuckerberg Grant”
December 5, 2018
BBC NEWS – News Article
“Faster diagnosis from ‘transformational’ gene project”
GAMT article featuring Hana Young
November 8, 2018
KUTV 2NEWS – Video
“Stored baby blood allows states to develop new blood tests, officials say”
View Heidi Wallis and her family featured on ‘Get Gephardt’
October 25, 2018
Intermountain Primary Children’s Hospital Grand Rounds – Video
“Brain creatine deficiency: Why newborn screening is important”, with presentations by Dr. Nicola Longo, Dr. Marzia Pasquali, and Heidi Wallis
March 6, 2018
Toronto Hospital for Sick Children Pediatric Grand Rounds
“Inborn Errors of Creatine Metabolism- It’s Not the Muscle, but the Brain”
View Dr. Schulze’s Presentation Here.
See the Overview PDF Here.
March 23, 2017
Primary Children’s Hospital – Blog
“Solving the Puzzle of GAMT Deficiency”
March 2017
ARUP Magnify Spring 2017 – Article
Special GAMT section, pages 8-13
March 2017
Child Neurology Foundation- “Rare Neurological Disease Special Report”
special CTD report, by Dr. Simona Bianconi, pages 50-51
Read the Report
February 1, 2017
Lumos Pharma launches creatine deficiency awareness website
Visit the Site
December 5, 2016
NBC affiliate KSL – Video
GAMT feature, “Bluffdale Family Helps Develop Test for Rare, Inherited Disorder”
November 30, 2016
University of Utah Health Sciences – Article
Algorithms for Innovation, GAMT feature- “A Lifetime Commitment”
November 3, 2016
Deseret Newspaper – Article
“Utahn’s Quest to Add Disorder to National Newborn Screening Dealt Setback”
November 2, 2016
Deseret Newspaper – Article
“Utah mom, doctors push to add rare disorder to national newborn screening panel”
June 21, 2016
Lumos Pharma appoints Carol A. Dutch as Senior Director, Patient Engagement
Read the Announcement
May 12, 2016
Spectrum News – Video
GAMT feature- “Family, Doctors Pushing for GAMT Deficiency Testing in Newborns”
April 6, 2016
Lumos Pharma Raises $34 Million in Series B Financing
Read the Announcement
October 29, 2015
The Jackson Laboratory- CTD feature “Cyclocreatine Normalizes Cognition in Creatine Deficient Mouse”
Read the Article
July 1, 2015
Utah begins Newborn Screening for GAMT
Read the Announcement
May 5, 2015
Austin Business Journal- “Startup Austin biotech firm nabs $19.5M for drug development”
Read the Article
February 27, 2015
Texas Children’s Hospital – Blog
“National Rare Disease Awareness Week: My Son’s Story”
December 10, 2014
ABC News – Video
“Mother’s Intuition Leads to Rare Diagnosis for Son”
June 7, 2014
ABC7 Chicago – Video
“Creatine Deficiency Among Disorders Underdiagnosed, Researchers Say”
February 5, 2014
BioNews Texas- “Creatine Transporter Deficiency Treatment By Lumos Pharma To Enter Testing, Thanks To $14 Million Series A Financing”
Read the Article
July 2, 2012
Journal of Clinical Investigation- “Cyclocreatine treatment improves cognition in mice with creatine transporter deficiency”
Read the Report
July 2, 2012
Neuroscience News- “Researchers Report Success in Treating Autism Spectrum Disorder”
Read the Article
February 9, 2010
WRAL TV- Video
“Duke Lab Tests for Rare Genetic Disorders”
January 18, 2010
CheckOrphan.Org – Article
“A Success Story: Family Hopes to Raise Awareness about Creatine Deficiency Disorder”
ACD News Releases
March 31, 2026
NEWS RELEASE – ACD awards fellowship grants to advance creatine deficiency research at six research centers
March 5, 2026
NEWS RELEASE – “Beast Games” winner Jeff Allen doubles down on mission to fund cure for rare disease affecting his son.
February 5, 2025
NEWS RELEASE – “Beast Games” winner Jeff Allen embarks on 365-mile “Ruck 4 Rare” challenge to raise awareness for creatine deficiencies and rare diseases.
February 15, 2025
NEWS RELEASE – Jeff Allen Wins $10 Million Grand Prize on “Beast Games”, Raising Awareness for Creatine Transporter Deficiency
February 12, 2025
NEWS RELEASE – ACD Awards $145,000 to Advance Creatine Deficiency Research at Six Research Centers
June 25, 2024
NEWS RELEASE – ACD Hosts CCDS Scientific & Patient Symposium and Champions for a Cure Gala in Salt Lake City
June 19, 2024
NEWS RELEASE – Association for Creatine Deficiencies Approved for $249,650 Award for Project to Build Upon Prior Work and Empower CCDS Parent Engagement in Research
March 27, 2024
NEWS RELEASE – ACD Funds nearly $140,000 for research focused on Creatine Transporter Deficiency Treatment
March 19, 2024
NEWS RELEASE – ACD Funds $135,000 in Creatine Deficiency Research Fellowship Awards
June 29, 2023
NEWS RELEASE – First Baby with GAMT Deficiency Identified Through Newborn Screening in Australia
March 20, 2023
NEWS RELEASE – Creatine Deficiency Research Center Funded by ACD Launches at University of Utah
February 17, 2023
NEWS RELEASE – ACD Announces Board of Directors Leadership Changes
February 14, 2023
NEWS RELEASE – ACD Funds $75,000 for 2023 Creatine Deficiency Research Fellowships
January 16, 2023
NEWS RELEASE – U.S. Secretary of Health Recommends Universal Newborn Screening for GAMT Deficiency
January 13, 2023
NEWS RELEASE – Dr. Steven Baker Awarded $20,000 Young Investigator Draft Research Grant to Research Cerebral Creatine Deficiency Syndromes
October 29, 2022
NEWS RELEASE – The Newborn Screening Ontario Program Begins Screening for GAMT
September 19, 2022
NEWS RELEASE – MDHHS adds Guanidinoacetate Methyltransferase Deficiency to newborn screening panel
May 13, 2022
NEWS RELEASE – Association for Creatine Deficiencies Announces the Advancement of Universal GAMT Newborn Screening for Approval by U.S. Secretary of Health
April 7, 2022
NEWS RELEASE – Association for Creatine Deficiencies Announces Second GAMT Gene Therapy Grant Awarded to Dr. Gerald Lipshutz
February 1, 2022
NEWS RELEASE – ACD Funds Over $100,000 for Creatine Deficiency Research Fellowships
January 10, 2022
NEWS RELEASE – ACD Expands with Addition of Executive Director, Board Chair & Director of Compliance
November 9, 2021
NEWS RELEASE – PCORI Funding Awarded to Association for Creatine Deficiencies
October 13, 2021
NEWS RELEASE – Dan Coller Joins the ACD Board of Directors
August 12, 2021
NEWS RELEASE – GAMT Deficiency Advances Towards Universal Newborn Screening
July 15, 2021
NEWS RELEASE – ACD Selects Dr. Olivier Braissant for Gene Therapy Advancement Award
March 15, 2021
NEWS RELEASE – ACD and NORD Launch the CreatineInfo Registry and Natural History Study of Cerebral Creatine Deficiency Syndromes
February 8, 2021
NEWS RELEASE – Randy Allen Joins Association for Creatine Deficiencies as Vice President and Director of Impact and Donor Relations
February 1, 2021
NEWS RELEASE – ACD Awards Over $100,000 to Cerebral Creatine Deficiency Syndromes Researchers
January 12, 2021
NEWS RELEASE– Erin Coller Joins the Association for Creatine Deficiencies as Director of Communications
December 30, 2020
NEWS RELEASE– First Baby with GAMT Deficiency Identified Through Newborn Screening
October 2, 2020
NEWS RELEASE– Association for Creatine Deficiencies (ACD) Awards Dr. Gerald Lipshutz Ph.D., with their Gene Therapy Advancement Award (GTA)
July 28, 2020
NEWS RELEASE– Association for Creatine Deficiencies (ACD) Awards Dr. Laura Baroncelli, Ph.D., the First Gene Therapy Advancement Award (GTA)
July 22, 2020
NEWS RELEASE– Celeste Graham Joins Association for Creatine Deficiencies as Director of Education
February 3, 2020
NEWS RELEASE– Association for Creatine Deficiencies (ACD) Receives $450,000 CZI Rare As One Grant
January 15, 2020
NEWS RELEASE– The Association for Creatine Deficiencies Welcomes Heidi Wallis as President
July 27, 2018
NEWS RELEASE– Association for Creatine Deficiencies Expands Patient Insights Network to Enable Data Sharing with ClinVar
July 11, 2018
NEWS RELEASE– Laura Trutoiu, Ph.D. Joins Association for Creatine Deficiencies as Director of Research
November 21, 2017
NEWS RELEASE– ACD Announces Addition of Dr. Andreas Schulze to Scientific Medical Advisory Board
November 9, 2017
NEWS RELEASE– ACD Applauds Quest Diagnostics Laboratory’s Addition of Creatine Disorders Panel
October 26, 2017
NEWS RELEASE– ACD Welcomes Dr. Yiumo Chan to the Scientific Medical Advisory Board
October 19, 2017
NEWS RELEASE– Greater Goods Roasting Launches Coffee Blend in Support of Creatine Deficiencies
October 9, 2017
NEWS RELEASE– Texas Benefit Concert Raises $50,000 for Creatine Deficiency Syndromes
October 1, 2017
NEWS RELEASE– The State of Michigan is Considering Screening Newborns for GAMT Deficiency
September 11, 2017
NEWS RELEASE– The State of Georgia is Considering Screening for a New Disorder in Newborns
April 1, 2017
NEWS RELEASE– Association for Creatine Deficiencies Announces New President and Board of Directors
March 28, 2017
NEWS RELEASE– Association for Creatine Deficiencies Welcomes New Board Member
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