“A Deeper Understanding of CCDS” – Sarah Young, PhD, FACMG Did you know the Association for Creatine Deficiencies has an amazing patient registry? For rare diseases, patient registries are critical […]
“Family Vacation” – Shelly We just had our first big family vacation. Overall it really was great, we had good strong family moments, Lilah got to chase seagulls, Tyler got […]
“Life With CTD” – Chelsi Hello, my name is Chelsi and I have CTD. 23 years have come and gone before I even knew about this condition. If it wasn’t […]
“Special Education” – Celeste Wow! I’m still processing all of the things I learned from the 2018 conference in Austin. The CCDS Symposium was incredible! For me, the information was […]
“It’s so Austin…” – Shelly “It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I inferred it to mean several different things- odd, wacky, unique. […]
“Got to Get You Into My Life” – Amy After learning about our son’s Creatine Transporter Deficiency (CTD) this past January, we started down the path to begin supplementing with […]
“#MyGivingStory” – Jerry This story was shared with #MyGivingStory in connection with the Giving Tuesday initiative. #MyGivingStory shares the stories of everyday heroes giving their time and talents to the […]
“Why Us?!” – Laura Sometimes it feels like everything just piles up – from the challenges of being diagnosed, seizures, hospital stays, to the complications we encounter every day.