CCDS News

  1. CCDS in the News
    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”

  2. ACD Press Releases
    July 28, 2020

    PRESS RELEASE– Association for Creatine Deficiencies (ACD) Awards Dr. Laura Baroncelli, Ph.D., the First Gene Therapy Advancement Award (GTA)


    July 22, 2020

    PRESS RELEASE– Celeste Graham Joins Association for Creatine Deficiencies as Director of Education


    February 3, 2020

    PRESS RELEASE– Association for Creatine Deficiencies (ACD) Receives $450,000 CZI Rare As One Grant


    January 15, 2020

    PRESS RELEASE– The Association for Creatine Deficiencies Welcomes Heidi Wallis as President


    July 27, 2018

    PRESS RELEASE– Association for Creatine Deficiencies Expands Patient Insights Network to Enable Data Sharing with ClinVar


    July 11, 2018

    PRESS RELEASE– Laura Trutoiu, Ph.D. Joins Association for Creatine Deficiencies as Director of Research


    November 21, 2017

    PRESS RELEASE– ACD Announces Addition of Dr. Andreas Schulze to Scientific Medical Advisory Board


    November 9, 2017

    PRESS RELEASE– ACD Applauds Quest Diagnostics Laboratory’s Addition of Creatine Disorders Panel


    October 26, 2017

    PRESS RELEASE– ACD Welcomes Dr. Yiumo Chan to the Scientific Medical Advisory Board


    October 19, 2017

    PRESS RELEASE– Greater Goods Roasting Launches Coffee Blend in Support of Creatine Deficiencies


    October 9, 2017

    PRESS RELEASE– Texas Benefit Concert Raises $50,000 for Creatine Deficiency Syndromes


    October 1, 2017

    PRESS RELEASE– The State of Michigan is Considering Screening Newborns for GAMT Deficiency


    September 11, 2017

    PRESS RELEASE– The State of Georgia is Considering Screening for a New Disorder in Newborns


    April 1, 2017

    PRESS RELEASE– Association for Creatine Deficiencies Announces New President and Board of Directors


    March 28, 2017

    PRESS RELEASE– Association for Creatine Deficiencies Welcomes New Board Member

  3. ACD Bulletin Board
    August 28, 2020

    THE ACD IS HIRING!
    OPERATIONS & SOCIAL MEDIA COORDINATOR
    The ACD is hiring a full-time “Non-Profit Operations & Social Media Coordinator”. The job description can be viewed here. To apply, please submit your resume with a cover page to: heidi@creatineinfo.org.

    REGISTRY COORDINATOR
    The ACD is hiring a part-time “Registry Coordinator”. View the job description here and email resume and cover page to: auract@creatineinfo.org to apply.

 

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