Our founder
Hi, I'm Abigail Biggins. I have Primary Carnitine Deficiency, and so do two of my six brothers. I was diagnosed as a newborn in 2008, after my newborn screen came back flagged. The genetic testing that followed showed our family would be living with PCD for the long haul. So if you are a parent reading this in the first week, I want you to know: I was that baby. I'm fine. Welcome to the Carnergia family.
As I got older I wanted to understand my own condition, and I found that the good research was scattered and hard to read. Around the same time I started struggling with some of the harder side effects of the standard carnitine supplement. Feeling stuck, I met with a compounding pharmacist, and that is where the idea for Carnergia began. Working with that pharmacist, and under my own doctor's prescription, I ended up with a slow-release compounded formulation that I have taken for a number of years. It has made daily life with PCD far more manageable for me.
I started Carnergia because I kept running into the same gap. Solid medical information about PCD exists, but it is scattered, and there was no single place built for the families actually living with it day to day: parents, teens, and adults. This site is my attempt to close that gap, with plain information, practical tools, and a way to share what I have learned with other families on the same road. I am here for all of you. PCD may be rare, but it matters, and it deserves the same time and attention as the conditions everyone has heard of.
I was born and raised in Boston, Massachusetts, the oldest of nine. I am building a career in clinical bioethics, the field that helps families and doctors make hard medical decisions together, with a focus on children and family-centered care. I serve on the Ethics Core of the AEGIS Trial at Tufts Medical Center, and I lead editorial and marketing teams at the Catholic University of America. My clinical experience includes the newborn intensive care unit and perinatal ethics, as well as geriatrics and psychiatry. When I am not working, I love philosophy, time with my family, traveling, and country dancing.
Our mission
Carnergia exists to make life with Primary Carnitine Deficiency less overwhelming. We do that with clear, trustworthy information, practical tools for parents and teens, a supportive community, and a safe way to explore treatment options with your own care team.
Our services
- Education. Clear, medically grounded guides on PCD for newly diagnosed families, parents, and teens.
- Practical tools. Checklists, trackers, and templates you can fill in on this site and print.
- Consultations. One-on-one conversations for parents, teens, and families working through a specific challenge.
- Community. A place built for people living with PCD.