The GeneSYS project continues to make meaningful progress toward a targeted treatment for Schaaf-Yang Syndrome (SYS), a rare genetic condition caused by a mutation in the MAGEL2 gene. While there is still important work ahead, recent developments are...
When it comes to rare conditions like Schaaf-Yang syndrome (SYS), every story has value. Each symptom, milestone, and lived experience helps deepen our understanding of SYS and strengthens the foundation for better care, support, and future treatment...
Biorepositories play a crucial role in rare disease research, acting as central locations to collect, store, and distribute samples such as tissues, blood, and cells. The Foundation for Prader-Willi Research, in partnership with COMBINEDBrain, has es...
What began as a casual birthday celebration at a local brewery has grown into one of the Schaaf-Yang syndrome (SYS) community’s most heartfelt annual fundraisers. Nearly ten years ago, Leslie and her husband found inspiration in an FPWR event hosted ...
In St. Petersburg, Florida, Chrissy and Matt Dickhaus are raising two little boys who bring light and joy into their lives every single day. Carson, age 3, is the proud big brother to Connor, who recently turned one. To celebrate, the family threw a ...
When Dr. Christian Schaaf began medical school, pediatrics was his plan. But it was the “medical mystery” cases that drew him in, and most of those mysteries had genetic roots. That curiosity eventually led him to identify what would become known as ...
When Kate and Zac Cassebarth attended their first SYS Family Conference hosted by the Foundation for Prader-Willi Research in 2024, they left with more than just new knowledge about Schaaf-Yang syndrome (SYS)—they left inspired.
At the 2025 United in Hope Conference, Dr. Jennifer Miller and Michael Tan, RD, from the University of Florida, delivered a powerful session that shed light on two critical areas for people living with Schaaf-Yang syndrome (SYS): hormone health and n...
In the late summer of 2025, an extraordinary fundraising effort took shape in the Rocky Mountains — one that was as physically demanding as it was deeply personal.
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 o...
