Steven Ringel
My diagnostic odyssey started over a decade before my eventual diagnosis when my ability to play sports like baseball went downhill rapidly. At 17, I was diagnosed with a rare form of rod-cone dystrophy, and I am slowly losing my vision as blind spots in my visual field expand in area and intensity. Several years later, my sister was diagnosed with the same condition, making the familial nature of inherited disease really hit home. I felt called to actively participate in the search for cures, for the sake of my family and those like us.
For me, it was essential to understand the current bottlenecks and exciting possibilities for new therapies so that I could help bring a treatment to my sister’s retina (and by extension, many others). I joined a biotech company combining genetic and clinical data to better understand the foundational elements of rare diseases, and I am energized by using my professional experience to help our community be innovators across the entire life sciences industry, illuminating the path forward for many rare families.
Steven hiking in Colorado in 2022 — he continues to enjoy outdoor activities with the vision he has.
In doing so, it has been striking how forward thinking the Foundation is, and incredible to see its impact at scale, as dozens of therapies are in development due to partnerships with the Foundation. I want patients and all stakeholders to know that the pace and quality of progress is extremely heartening.
I hope by sharing my story, affected and unaffected people are motivated to donate to the Foundation to expand the impact of current and future programs. Equally important, is participation in the My Retina Tracker Registry and Open Access Genetic Testing programs to ensure researchers can understand your specific disease and trajectory through the data you share. Awareness is critical to the mission of the Foundation, as well as, we seek to grow the public understanding of what it means to have vision loss. Regardless of how you and your family choose to get involved, I encourage you to get engaged — “Together, we're winning” is more than a tagline, it is the reality.
