“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” – Nancy Over-protective. Controlling. Helicopter Mom. Whatever you call it, that’s who I am. I’ve been this way since my first child […]
“Gene Sequencing and Gene Therapy” – Matthew Skelton, PhD Watching the videos that are posted from the conference brings back the excitement and all the feels from being at the […]
“Obtain, Maintain, Sustain” – Regina Immediately following Caiden’s birth, we knew he was facing many struggles. We had a lot to learn. We had a lot to help him overcome. […]
Creatine Deficiency Educational Video When it was decided to do the first ACD Scientific Symposium and Family Conference in Austin, TX 2018, the idea that so many of us would […]
“Super Bowl Sunday 2017—Diagnosis Day” – Erin Super Bowl Sunday marks two years since we officially received Cadman’s diagnosis. It was so strange answering an unexpected phone call from the […]
“CCDS Seizures” – Denise Morita, MD Our son Dylan, who is 5 and was diagnosed with CTD earlier this year, was originally diagnosed with epilepsy at the age of 2. […]
“Christmastime” – Lacy I love this time of year! I love snuggling with my kids beside the soft glow of the Christmas tree and pretty decorations as they fall asleep. […]
“#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 […]
“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 […]