When Lior’s two young children were unexpectedly diagnosed with Wolfram syndrome, everything in her life shifted. Now, she’s channeling fear into hope — and calling for urgent support for research that could lead to a cure.

Cathy, 69, shares how a late diagnosis of Wolfram syndrome reshaped her independence, fueled her advocacy and inspired her to build community through storytelling.

Michele L., 58, reflects on the process of getting an accurate diagnosis and the importance of community while living with Wolfram syndrome. 

Diagnosed at 34 after rapid vision loss, Richie later learned he had the Ashkenazi subtype of Wolfram Syndrome — now he’s helping reshape clinical research to better reflect patient needs.

Rachel shares how her diagnosis brought clarity to years of unexplained symptoms, including color blindness and atypical diabetes.

Carol shares how her daughter’s Wolfram Syndrome diagnosis shifted her from shock to advocacy, channeling her need for control into supporting research, awareness, and future generations.