Latest posts tagged with #CreatineInfo on Bluesky
First day of the #CCDS conference at the Institute Imagine in Paris! Thank you, Association Extraordinaire, for organizing. This chance to catch up on the research and connect with CCDS families is so valuable. #raredisease #creatineinfo #ctd
It's the 10th annual Walk for Strength day! Thank you to everyone who has donated so far. Help us reach our goal at creatineinfo.org/xavier
#WFS2025 #CreatineInfo #acd #creatinedeficiency #ctd
The work done by the Association for Creatine Deficiencies has been life changing for our family. This article outlines how ACD has organized, advocated and pushed forward research for these #rare diseases. #CreatineInfo #rarediseases #advocacy #patientled #diagnosis
CTD dad, Jeff Allen, sat down with The Iced Coffee Hour to give a behind-the-scenes look at his experience on Beast Games! 🏆🔥
Catch the interview: tr.ee/S2pLKc
#CreatineHeroes #CreatineInfo #CreatineResearch #ACDResearch #RareDiseaseAwareness #RareDisease #Ruck4Rare #IceCoffeeHour
Minnesota has begun screening all newborns for GAMT deficiency. 💖Over 64,000 babies are born each year in Minnesota! Now, 39% of babies born annually in the U.S. will be screened for GAMT. 🎉
Source: tr.ee/l35xLx
#CreatineInfo #CreatineResearch #NewbornScreening #ScreeningSavesLives #ScreenGAMT
📢 Community Chat!
🗓 Friday, March 7th | 3 PM EST
Topic: Creatine Deficiency - Diagnosis, Inheritance, & Mosaicism - Your Questions Answered
Speakers: Dr. Sarah Young & Jenny Goldstein
📌 Register: creatineinfo.org/chat-series
#FuelingHope #CreatineInfo #CreatineResearch #ACDResearch #RareDisease
Did you know the zebra is the symbol of rare diseases? Doctors are trained to hear hoofbeats and think horses, not zebras. But sometimes, they need to think rare.
CTD mom, Kelly, is sharing her family’s story:
tr.ee/5mcdVF
#RareDiseaseDay #CreatineInfo #CCDSResearch
Photo of a smiling white man with short white hair and wearing a blue and white sports jersey, accompanied by captions: congratulations Jeff Allen. Beast games winner! February 13, 2025.
Two things can be true at the same time: It is amazing that Jeff won the big $10 million prize, which he will use to support CTD research. Also, it's awful that we have to resort to Hunger Games style competitions to fund rare disease research. 🧵 #raredisease #mrbeast #ctd #creatineinfo
CCDS Day 2025 Our Hopes for a Treatment. Our hope is that a treatment for Xavier would allow him to bathe and use the toilet independently, so he could do more activities that typical teens can do.
#CCDSDay #FuelingHope #CreatineDeficiencyResearch #CreatineHeroes #CreatineInfo #CreatineResearch #ACDResearch #RareDiseaseAwareness #RareDisease
