Biorepositories play a crucial role in rare disease research, acting as a central location to collect, store, and distribute samples such as tissues, blood, and cells from individuals. The Foundation for Prader-Willi Research, in partnership with COM...
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...
In a recent research update video from the United in Hope 2025 Conference, scientists from Heidelberg University—Dr. Rachel Gilmore, Dr. Ferdinand Althammer, Felix Franke, and Tim Schubert—shared exciting progress from their FPWR-funded studies focus...
What if we could target the very root of Schaaf-Yang Syndrome (SYS) and dramatically change the trajectory of this condition? With the launch of GeneSYS, the Foundation for Prader-Willi Research is taking a bold leap in that direction.
For families exploring growth hormone therapy for loved ones with SYS, a 2021 study by Hebach et al. offers helpful insight.
What if the key to treating a rare genetic condition lies not just in whether a protein is present—but in where it ends up inside the cell? This is the case with the MAGEL2 protein, which plays a critical role in cell function and is missing or alter...
A special blog contribution from Roya Malaekeh. People often ask what it was like getting a diagnosis, especially since we had endured a year without one. When I got that phone call from the geneticist, it felt like a boulder was lifted off my chest ...
