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Creatine Info @CreatineInfo

A NonProfit dedicated to the three major Creatine Deficiency Syndromes- AGAT, GAMT, and CTD

Joined September 2014
  • Tweets 1,763
  • Following 125
  • Followers 378
1,401 Photos and videos
Join Momentum League Support continuous CCDS research with a monthly gift. Even $10 makes a difference! First 50 get 50% off one shop item. Let’s fuel progress together! Join now: creatineinfo.org/momentum #MomentumLeague #RareDisease
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Read the 2024 CreatineINFO registry report: creatineinfo.org/wp-content/… Questions about the Registry? email us! registry@creatineinfo.org
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Awareness in action! 💪 @Legacy_831 's @accesshollywood interview highlights how his Beast Games win is boosting awareness & support for creatine deficiencies & CTD research. Thank you, Jeff! Watch now: tr.ee/VtEFAb #RareDisease #CTD
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Ceres Brain Therapeutics has launched a Phase 1 trial for a potential CTD treatment! 🧠 Join the virtual Town Hall April 28 at 11am EST. Submit questions by April 21! Register or request a recording: creatineinfo.org/ceres-townh… #raredisease #CTD
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👟 Walk for Strength Early Bird rates through Sunday Sign up, start a team, or donate today. Let’s take steps toward a cure together 💪 creatineinfo.org/walk #WalkForStrength #RareDisease #GAMT #CTD #AGAT #TeamACD #WFS2025
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The federal committee overseeing newborn screening has been dissolved, shifting the burden to each state. This threatens progress like GAMT adoption. Learn more & take action: tr.ee/jwqSpp More info: tr.ee/wbgFDW #RareDisease #ScreeningSavesLives
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Walk for Strength is happening worldwide—Spain, Canada, Italy, Germany & the U.S.! 🌍 Every step counts, big or small. Start your team today & show the world how strong our CCDS families are. 💙 Sign up: creatineinfo.org/walk #raredisease #wfs2025
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Early bird registration extended through April 20! 🐦 Save $5—just $25 for adults, $20 for youth. Lock in your spot, get your shirt, and join the fun! 👉 creatineinfo.org/walk #wfs2025 #creatineheroes #WalkForStrength #RareDisease
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Did you catch our March newsletter? 💌 It’s full of updates on newborn screening, Walk for Strength, upcoming events, and a big thank-you to Heidi for 10 years with ACD! 👉 Read or watch: tr.ee/6KvwKh | Subscribe: tr.ee/gU6RHq #FuelingHope #RareDisease
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April’s Community Chat is now available! 🌷 Topic: Growing Communication Skills with Tanna Neufeld. Learn how emotional connections support language in kids with complex needs. Watch here: youtu.be/w5RWv4WDs7c #CreatineHeroes #RareDisease
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One week left to save $5 & get your Walk for Strength tee! 💙 Join us for a fun day with your team while supporting a cause that matters. Find your team: creatineinfo.org/walk #WFS2025 #CreatineHeroes
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Early Bird Registration is Open! Join us for the Walk for Strength! Team up, start your own, or walk solo. Everyone’s welcome! Sign up now to save $5 & guarantee your exclusive Walk for Strength t-shirt. Register: creatineinfo.org/walk #CreatineHeroes#WFS2025
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April’s Community Chat: Growing Communication Skills with Tanna Neufeld! 🌱 🗓️ April 4 | 🕒 3 PM EST Discover how social-emotional connections help language grow in kids with complex communication needs. Register: tr.ee/4ETaG6 #CreatineHeroes #RareDiseaseAwareness
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🎉 Last year, 31 teams raised $131,110! This year, for our 10th annual walk, we’re aiming for 40 teams & $200K! Get creative: Push-up challenge Group hike Block party However YOU walk, we’re here to support you! 🚶‍♂️Sign up: creatineinfo.org/walk #WalkForStrength #RareDisease
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VA RUSP alignment bill passed! Est adoption: 2025! ACD nominated GAMT for the RUSP, one step closer to more newborns being screened! Now, we’re pushing for CTD screening too. Join the fight for newborn screening! 🔗 tr.ee/omXhhu #ScreenCreatine
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SibTalks is back in April! Last time, the younger group got creative with drawing & a dance party, while the older group had a blast with a virtual scavenger hunt. 📅 Register now: creatineinfo.org/sibtalks #FuelingHope #RareDiseaseAwareness
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Registration Opens April 1st! Step up for a cure! Walk for Strength registration opens April 1st, and you’ll save $5 when you sign up by April 14th. Join us to raise awareness & funds for creatine deficiencies. Every step counts! Find your team: creatineinfo.org/walk #WFS2025
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🧠 Thank you, Frontiers in Neuroscience! We’re excited to share this peer-reviewed article on efforts to accelerate diagnosis & develop treatments for Creatine Transporter Deficiency. 🔗 Read here: tr.ee/aJQy6V #CreatineResearch #ACDResearch #RareDisease
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Missed the March Community Chat? Catch up now! How is a creatine deficiency diagnosed? What is mosaicism? What does X-linked mean? 📺 Watch now: tr.ee/oQ780D #CreatineDeficiency #RareDisease
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What does a Team Captain do? It’s simple—pick a spot, invite your people, & join together for CCDS awareness! Your walk can be as laid-back or extravagant as you choose Sign up today: creatineinfo.org/walk #CreatineResearch #ACDResearch #RareDisease #WalkForStrength
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