“Rare Diseases” – Lacy
“Rare Diseases” – Lacy Being a parent of a child with a rare disease has its unique challenges. There are…
“The Carousel” – Nancy
“The Carousel” – Nancy The bell rang, the music started, and we began moving slowly. The expression on his face…
Creatine Decoded: How to Read your Genetic Test Report – Webinar Recap & Video
Creatine Decoded: How to Read your Genetic Test Report – Webinar Recap & Video This essay was written by Erin…
“My Worst Fears” – Chelsi
“My Worst Fears” – Chelsi Do you ever feel like all the work we do for our kiddos is not…
“The Rare Sibling Experience: NORD Webinar” – Erin
“The Rare Sibling Experience: NORD Webinar” – Erin The National Organization for Rare Disorders (NORD) recently hosted a webinar on…
“Coping With the Fear” – Nancy
“Coping With the Fear” – Nancy I had just poured myself a cup of coffee and settled in for the…
“New Rules for our School” – Randi
“New Rules for our School” – Randi We are very fortunate in our state to have scholarships for children who…
Creatine Decoded: CCDS Gene Therapy Research
Creatine Decoded: CCDS Gene Therapy Research This essay was written by Laura Trutoiu, ACD Director of Research, with support from…
“Creating a Meaningful Life in the Midst of COVID” – Nancy
“Creating a Meaningful Life in the Midst of COVID” – Nancy It’s 3 AM and I can’t sleep. Again. I…
Creatine Decoded: Featured Scientist, Dr. Jonathan Schlebach PhD
Creatine Decoded: Featured Scientist, Dr. Jonathan Schlebach PhD This essay was written by Celeste Graham, ACD Director of Education, with…