1. CCDS in the News
    August 24, 2021

    “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
    “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

    “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”

  2. ACD News Releases
    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

  3. ACD Bulletin Board

Insider eNews | ACD Newsletter


September 2021 Newsletter