“The Life of Alfred” – Nathan Every kid dreams of growing up to be a superhero. I can remember running through the house pretending to be everyone from the Incredible […]
“GAMT Novel Therapeutics” – Andreas Schulze, MD PhD FRCPC The ACD Conference held in Austin, TX in July 2018 was truly a wonderful experience and opportunity for so many of […]
“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 […]
“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 […]