My name is Levi, and I’m a rare disease advocate based in Baton Rouge, Louisiana. I serve the CDKL5 community as the Social Media and Advocacy Coordinator at IFCR, where I focus on creating honest, human, and hopeful content as well as amplifying the voices of CDKL5 families. While I’m still relatively new to the CDKL5 community, my experience is deeply rooted in the patient experience.

My life changed in 2016 when I was diagnosed with Secondary Intracranial Hypertension, Behcet’s Disease, and Parkinson’s, and since then I’ve undergone 11 major brain surgeries as part of my ongoing fight to stay here and stay present. Before I ever called myself a patient advocate, I was a Firefighter/EMT. Working on the front lines of emergency care gave me a close-up view of how the healthcare system really works—and doesn’t work—for people in crisis. That experience became the foundation for my own diagnostic journey and now shapes the way I show up for other patients and families navigating complex medical challenges.

Over the last 10 years, I’ve built my career in patient advocacy as a survivor and storyteller—using words, education, and community-building to help people feel seen, heard, and better equipped to advocate for themselves. My focus is on closing gaps in care, translating complicated information into something real people can use, and making sure patient voices are not just included, but truly centered. At IFCR, I’m especially passionate about partnering with CDKL5 families to share their stories, create resources that actually feel practical in real life, and build a community rooted in connection, compassion, and hope.