@creatineinfo

creatineinfo has been a member of Linktree for 5 years and joined in November 2020. The social media accounts linked to from creatineinfo are: • Facebook • LinkedIn • Payment Besides social media accounts, creatineinfo has populated their site with: • Understanding SUDEP • 2026 Fellowship Program • 2025 Registry Report • ACD Website • ACD Newsletter • Association for Creatine Deficiencies • CreatineINFO Patient Registry • Watch the Life of Lucas documentary! • Donate to our Race for a Cure • Join Momentum League • Newborn Screening • Visit our Website • CCDS Symptoms & Screening • Find us on Facebook! • Ask the Experts • ACD Community Survey • EL-PFDD Meeting on CCDS • Holiday Heroes - Association for Creatine Deficiencies • No Limits - Association for Creatine Deficiencies • Home Page - CreatineInfo Registry • 2024 CCDS Scientific + Patient Symposium in Salt Lake City, UT - Association for Creatine Deficiencies • bit.ly • ICD-10 Coordination and Maintenance Committee Meetings | CMS • Holiday Heroes 2023 Fundraising Kit - Association for Creatine Deficiencies • Community Chat Series - Association for Creatine Deficiencies • Community Chat Series - Dr. Steven Baker 11/17/2023 • ACD Australia • Core Outcome Set (COS) - Association for Creatine Deficiencies • CCDS Day 2024 Registration - Association for Creatine Deficiencies • CCDS Day 2023 Video - English • Newborn Screening - Association for Creatine Deficiencies • secure.givelively.org • ACD Registry • CCDS Day 2024 - Association for Creatine Deficiencies • Sibshops Sign-Up - Association for Creatine Deficiencies • Special Occasion Fundraiser Support Request • CA Public Health - GAMT Newborn Screening Announcement • 2024 CCDS Scientific & Patient Symposium Presentation Recordings • 2024 Symposium Presentation Recordings • ACD Q3 Newsletter • Chan Zuckerberg Initiative CCDS success story • View Dr. Lipshutz's Talk on Gene Therapy • View Tannalyn Neufeld's Talk on Language Development • Troy Webster - Optimal Dosage for IT Delivery of SLC6A8 Gene Therapy • Take Action - U.S. Advocacy Opportunity! • September Community Chat Series Sign Up • Sign up for Sibtalks • Getting on BeastGames - Jeff Allen's Story • The Iced Coffee Hour - Jeff's in-depth interview • Follow Jeff's Journey • Two Disabled Dudes Podcast - Guest, ACD's Heidi Wallis • 20% Off ACD Merch • Follow Jeff's Journey on Youtube • Watch the April Community Chat • Frontiers Article: How a patient-led advocacy organization supports the road to diagnosis and treatment of Creatine Transporter Deficiency • Ceres Town Hall Recording • Read the March Newsletter • Take Action! Sign to save the newborn screening system • Changes in Newborn Screening - TIME mag • Jeff Allen - Access Hollywood Interview • National Academies: Report Release Webinar • PatientINFO 2024 Registry Report • Race for the Cure - Acceleration Grants • Dr. Steven Baker - CTD Study • Virtual Conference Registration • Hope For Oscar • Donate Now | 10th Annual Walk for Strength by Association for Creatine Deficiencies • GAMT Sibling study • Tesla Peretti in the Walia Lab - Protein Extracton • Ace Line Plant - Walk Sponsor • Brighton Park Capital - Walk Sponsor • Alzchem - Walk Sponsor • Tesla Peretti in the Walia Lab - Western Blotting • Team Crosby In The News • 2025 CCDS Virtual Conference • Aleksander Bogoniewski Q&A • GIRLS IN CTD RESEARCH • Bell Ringing Ceremony with Jeff Allen • Behind-the Scenes at UCLA • Community Chat Series: Supports and Communication in Education • Dr. Chin-Yi Chen Q&A • VOTE NOW: Challenge or Reward for Jeff's 68 mile walk • Kids Camp Survey