I’m a founding member and Vice President of the Illinois Rare Disease Alliance. In November 2017, my life changed when my wife, Shadene, was diagnosed with ALS. That diagnosis not only brought our family into the world of rare disease but also opened my eyes to how isolated and fragmented support can be across Illinois.

Driven by Shadene’s journey and the need for stronger patient advocacy, I became deeply involved in rare disease work. I met Wayne and Henry at Rare Disease Week in Washington last year, and our conversations sparked a shared belief that Illinois urgently needed a unified voice for patients and families with rare diseases. That’s how the Illinois Rare Disease Alliance began — born from the idea that we’re stronger together.

Today, I help lead the Alliance as a nonprofit organization led by patients and caregivers. We unite patients, families, advocates, researchers, and healthcare professionals to improve the lives of the 1.2 million Illinoisans living with a rare disease. Together, we’re building a more connected, visible, and powerful rare disease community across our state.

I am a rare cancer survivor and patient advocate living in Morton, Illinois, using my lived experience to support individuals and families navigating rare and ultra-rare diseases. Through grassroots advocacy and community engagement, I work to elevate patient voices, encourage caregivers, and help turn shared challenges into meaningful change at both the state and federal level. Full bio.

My condition is unique to my family. The correct diagnoses took over 50 years. I live with altered drug metabolism and my medicines have to be custom-made. I work on state-level health parity for rare patients, providers, and care givers.