Embracing the puzzle of rare diseases: reflections on non-profit leadership and service Special Message to CCDS Community from Former ACD Board Chair Laura Trutoiu When Rohan was diagnosed with Creatine […]
“Success Using Teletherapy” – Randi Most of the country has been on hold for a few months due to the COVID-19 virus. Even now, with the country reopening, our family […]
“GAMT Newborn Screening Video” – Heidi I recently had the privilege of sharing my family’s GAMT story with a group of professionals from ARUP Laboratories.
“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with advocacy at the ACD and what I’ve been learning from […]
“IRONMAN Lake Placid Recap” – Jerry My fourth Ironman is in the books. Lake Placid, New York is a beautiful place and the trip was amazing. Beth and I chose this […]
How Pharmacogenomics Hopes to Improve the Treatment of Cerebral Creatine Deficiencies Kim Tuminello, Director of Advocacy for ACD, recently sat down with Dr. Ruben Bonilla Guerrero, who is the Medical […]
“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 […]
“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 […]
“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 […]