Why do I love DEE-P Connections?

Why do I love DEE-P Connections? I had never heard of a Developmental and Epileptic Encephalopathy (DEE) until we were told our daughter had one. She was just three months old when she received an epilepsy diagnosis and four months old when we were told it was a DEE. I remember frantically searching for help, support, and resources and what I found was DEE-P Connections.

For me, DEE-P Connections has always felt like the Epilepsy Foundation for rare epilepsies. It’s an organization for the rare and undiagnosed communities, run by parents with lived experience. Many in the DEE community have patient/family advocacy organizations for their specific diagnosis. Our daughter’s DEE is currently undiagnosed, so for us, DEE-P is our home advocacy organization and I am so proud of that. DEE-P’s resources are broad and expansive enough to cover topics related to children with rare and severe epilepsy, medical complexities, and disabilities, regardless of a diagnosis or not. All the resources are free, because DEE-P truly wants to serve and support those who need it most without expecting anything in return.

I am proud of the advocacy and research initiatives DEE-P Connections is part of and I am grateful knowing they have a “seat at so many tables” advocating on our behalf. They have advocated on Capitol Hill and with the FDA to increase federal funds for the DEEs and epilepsy disorders, for greater access to clinical trials, and to increase research funding that is desperately needed. DEE-P Connections has been involved in a number of research studies and publications and is a leader of the Inchstone Project, a research project seeking to create better, more sensitive, developmental outcomes measures to capture the “inchstones” (not milestones) of our most severely impacted.

The work of DEE-P Connections is a labor of love, and community, families, and our kids are at the heart of that. I am grateful DEE-P Connections is growing, I want any family in need to find them and get the support they need. If you have a loved one with a rare epilepsy, medical complexity, or disabilities, or if you know someone who does, I would ask you to consider making a contribution. No gift is too small and each gift goes a long way toward helping DEE-P Connections grow their initiatives, expand their reach, and support more families.

From my family to yours, thank you!

With love and Gratitude,
Anne Thompson Heller, Mom to Jordan – a little girl with an Undiagnosed DEE