“#MyGivingStory” – Chuck 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 […]
“Patient Champion” – Amy A couple of weeks ago, we participated in something special – our Ben was a Patient Champion at the Nationwide Children’s Hospital Columbus Marathon and Half […]
“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 […]
“Hook ‘em Horns” – Laura I know those who attended the conference in Texas this summer will all agree that is was fabulous. It was so great getting to meet […]
“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 […]
“Newborn Screening Presentation” – Kim Tuminello & Nicola Longo, MD PhD September is National Newborn Screening Awareness Month, and on that note, we would like to share with you the […]
“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 […]
“Three Lessons from the First ACD Patient and Family Symposium” – Laura On a balmy night in late July we flew into Austin for the first Cerebral Creatine Deficiencies Syndrome […]
“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 […]
“New Year, New Boy?!” – Laura Hey everyone! I hope the new year is off to a great start! Levi has been in first grade this year, and absolutely LOVES […]