Hi, I’m Jay Hebert. I founded the CDG-PMM2 Hope Foundation with my family after our son, Christian, was diagnosed with PMM2-CDG. Here’s our story, and why we built Hope Community.
Why we started
Our son, Christian, was diagnosed with PMM2-CDG after a long search for answers. We saw five pediatricians who did not share our concerns before we found a specialist who ordered genetic testing. The result was a rare disorder with no cure. Today, Christian uses assistive rails installed throughout our home to walk on his own, and that experience inspired our family to help others.
What CDG-PMM2 is
PMM2-CDG is a rare congenital disorder of glycosylation. It can affect nearly every system in the body, including the brain, muscles and metabolism. There is currently no cure.
Why this community exists
When you are facing CDG-PMM2, it can feel like no one else understands. Hope Community is here so that families going through the same challenges know they are not alone. It is a place to talk with parents and caregivers who have been where you are, or who are there right now, and to learn from each other’s experience.
About the foundation
The CDG-PMM2 Hope Foundation works to make an immediate difference for children with CDG by helping families get assistive devices, wheelchairs and medical equipment. Learn more, or support the foundation’s events such as its annual golf charity tournament, at cdg-pmm2hopefoundation.org.