At the 2024 FPWR Conference, the session "Growing Up with a Sibling with PWS" offered a heartfelt and detailed look into the experiences of siblings of children with Prader-Willi Syndrome (PWS). Led by Dr. Lauren Schwartz Roth, a researcher and mothe...
A special contribution by guest blogger Lisa Matesevac. Welcome to the ATL! We are thrilled that our city will host the annual Foundation for Prader-Willi Research Symposium and Family Conference in September 2024! Together with my family and the Geo...
Topics: Parents
You won’t want to miss these speakers at the 2024 FPWR Family Conference this September in Atlanta, GA. This year's conference has something for every parent traveling this PWS and SYS journey. Attend interactive workshops designed to provide practic...
Topics: Parents, Adults, Children 0-3, Children 3-6
Kathryn McGhee has been an active member of our PWS community for 22 years, participating in numerous letter-writing campaigns and PWS clinical trials and hosting over a dozen fundraisers for FPWR! As a proud mom to Hannah (who recently turned 23), K...
Topics: Stories of Hope, Parents
Since first tapping into our community 12 years ago, Katie and Adam Larson have been ready to do whatever it takes to find treatments and a brighter future for their son, Graham. From co-hosting One SMALL Step walks to throwing memorable Live Life FU...
Topics: Stories of Hope, Parents
Have you ever wanted to know more about the drug development process and how patients and patient organizations like FPWR can engage with and inform the process? The National Organization for Rare Diseases (NORD) has developed a free educational seri...
In this 1 hour and 52-minute video, Dr. Anastasia Dimitropoulos of the PRETEND Program, Staci Zimmerman, and Cindy Szapacs discuss social strategies, IEPs, and behavior in the early school years for children with PWS.
Topics: ages: 4-7, Parents, Children 3-6, Children 6-12
The FPWR Genome Study, full title “Whole Genome and RNA Sequencing Analysis in Prader-Willi Syndrome," is an ongoing whole genome sequencing study among 50 individuals with PWS. The goal of the study is to determine if genetic variants outside the PW...
Topics: Resource Development, Research, Parents
Schaaf-Yang syndrome (SYS) is an ultra-rare disorder that was first identified in 2013. It is caused by mutations in the MAGEL2 gene, a gene that is also deleted or inactivated in Prader-Willi syndrome (PWS). Because SYS is a relatively newly describ...
