“Are You a 21st Century Pioneer?” – Nancy
“Are You a 21st Century Pioneer?” – Nancy Pioneer. Verb. A person who is among the first to develop or…
“CLOSED.” – Nancy
“CLOSED.” – Nancy “School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t…
“Progress” – Lacy
“Progress” – Lacy My son recently said my name for the first time. I don’t mean he called me Mommy….
“Our Journey Into Medical Marijuana for Epilepsy” – Nancy
“Our Journey Into Medical Marijuana for Epilepsy” – Nancy The following is our journey into using Medical Marijuana (MMJ) with…
“I Wish I Had a Brother” – Janet
“I Wish I Had a Brother” – Janet I wanted to talk a bit about something that my son said…
“GAMT Newborn Screening Video” – Heidi
“GAMT Newborn Screening Video” – Heidi I recently had the privilege of sharing my family’s GAMT story with a group…
“Creating Capacity” – Janet
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I…
“Drug Development- A Parent Perspective” – Erin
“Drug Development- A Parent Perspective” – Erin When the news came out about Lumos stopping the development of the drug…
“My AGAT Story” – Christina
“My AGAT Story” – Christina The Association for Creatine Deficiencies (ACD) recently interviewed Christina, a 17-year-old senior in high school,…
“Jacob” – Lacy
“Jacob” – Lacy A phrase I hear quite often is, “I don’t know how you do it.” I don’t always…