Pat Gibilisco Stepping Down from Patient Administrator

Pat will be stepping down from the role of Patient Administrator. We appreciate all the dedication and hard work Pat has shown during her time in this position. Pat, a pioneering figure in the Wolfram syndrome community, was the Co-Founder of the first Wolfram Syndrome Website and Family Support Group. This initiative, which she launched in 1998 when her 12-year-old daughter, Lauren, was diagnosed with Wolfram syndrome, was a beacon of hope for many. Pat’s proactive approach led her to contact Dr. Timothy Barrett, the only physician specializing in this disease at the time. With Dr. Barrett’s help, she was connected to other Wolfram families, including Rob Birkinshaw, the Co-founder of the first WS Website. Pat contacted the late Dr. Alan Permutt in 2000, who discovered the WFS1 gene. Dr. Alan Permutt conducted the first Wolfram syndrome research clinic in 2010, which included Lauren and six other patients.

Pat has been the Snow Foundation’s Patient Administrator and Wolfram syndrome Facebook page admin for over four years. She has always been passionate about educating and supporting patients, families, and caregivers, providing valuable resources and connecting them with others affected by this rare disease. Her commitment has helped grow the advocacy community to over 500 families worldwide.

Since her daughter Lauren sadly passed away from Wolfram syndrome in 2021, Pat became an even more passionate advocate for Wolfram syndrome. Our community truly couldn’t have asked for a more caring and dedicated champion than our wonderful momma bear, Pat! We will deeply miss her presence in our daily lives, but we are so grateful that she will continue to serve as a board member. If you want to contact Pat, please email her at pat@thesnowfoundation.org.