The 17th Annual I Gotta Guy Sausage Festival, hosted in August 2025 by the Nelson and Niedorkorn family, once again brought together an extraordinary community for an evening of food, fun, and fundraising; welcoming more than 400 guests and raising over $260,000 for Schaaf-Yang Syndrome (SYS) research!
100% of funds raised from this year's event will support GeneSYS, FPWR’s bold new research initiative aimed at addressing the root cause of Schaaf-Yang Syndrome. GeneSYS is exploring whether antisense oligonucleotides (ASOs) can block the production of a harmful protein that is building up in the cells of people with SYS—potentially paving the way for the first-ever treatment designed specifically for SYS.
From the moment guests arrived, Galleria Marchetti was alive with the scent of sizzling sausage, the sounds of live music, and heartfelt conversations about hope, progress, and community. Among the many memorable moments, the presence of Emma, Alia, and Nathan—three of our incredible SYS heroes—was especially inspiring. Their smiles, courage, and energy reminded everyone why this mission matters so deeply.
That same spirit of dedication was embodied by Morley Rushford, Executive Vice President of the MZI Group, who received the 2025 Hall of Flame Award. Morley’s steadfast support of the I Gotta Guy Sausage Festival has helped make this event a remarkable success, fueling hope and creating meaningful change for families affected by SYS. FPWR extends heartfelt thanks to Morley for his generosity, leadership, and unwavering commitment to our shared goal of finding treatments.
The Sausage Festival is more than just a celebration—it’s a testament to the power of community action. Each dollar raised brings us closer to unlocking treatments, and each person in the room serves as a reminder of what can be achieved when people unite behind a shared mission. We are deeply grateful to the event organizers, guests, sponsors, donors, and volunteers who make this gathering possible year after year. Your support is accelerating research, raising awareness, and improving the lives of those living with SYS.
Thank you, Nelson & Niedorkorn families, for your commitment to finding treatments for SYS! Because of supporters like you, progress toward new treatments—and a brighter future for the SYS community—is within reach.
