After being diagnosed in February 2026, I've learned so much about this family of diseases and how little is currently understood. I had to join a local FB group just to find a doctor who was knowledgeable enough to be able to diagnose me!

I'm doing my part by participating in clinical trials as well as spreading awareness. I'd love to help even more by fundraising for additional research and resources for people like me!

There may never be a cure but increasing awareness will help with improving rates of early diagnosis, advocating for accommodations, and increasing the chances of finding more treatments.

I plan to share my half marathon training throughout May, which is EDS/HSD awareness month, with the fundraiser ending on June 6th, the date of my half marathon. Please feel free to follow along and share if you'd like!