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
Read the 2024 CreatineINFO registry report: creatineinfo.org/wp-content/…
Questions about the Registry? email us! [email protected]
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
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
👟 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
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
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
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
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
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
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
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
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
🎉 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
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
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
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
🧠 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
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
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




















