During the recent GeneSYS Update Town Hall, FPWR shared encouraging progress on the GeneSYS project, a research initiative focused on developing a targeted therapeutic approach for Schaaf-Yang syndrome (SYS). While this work is still in the early sta...
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 ...
