Foundation for Prader-Willi Blog

New Resource for Parents: Helping Siblings Thrive in a PWS Family

The challenges of Prader-Willi syndrome extend beyond the individual diagnosed to the entire family. Siblings growing up in a household with a person with PWS may need extra support to help them navigate their new normal and the unique family situati...

February 4, 2025 Read More

Topics: Resource Development, Parents

Help Drive Progress: Become an Advocate Reviewer for PWS Research

A special contribution by guest blogger Will Greene. The future of PWS research depends on more than just scientists—it also needs the voices of parents, caregivers, and PWS advocates to guide meaningful progress. Becoming an Advocate Reviewer for FP...

January 28, 2025 Read More

Topics: Parents, Advocacy

Planning for the Future: Estate and Insurance Insights for Families

Planning for the future can feel overwhelming, but it’s essential for families of individuals with Prader-Willi Syndrome (PWS). At the 2024 FPWR Conference, two experts shared actionable insights into estate planning and insurance benefits, empowerin...

January 21, 2025 Read More

Topics: Parents

Navigating PWS: Stories, Strategies, and Insights from the FPWR Conference

The 2024 FPWR Conference opened with a powerful session featuring a panel of experts that left attendees inspired and better equipped to navigate the challenges of PWS. From addressing behavioral challenges to securing effective Individualized Educat...

January 8, 2025 Read More

Topics: Parents

Growing Up With a Sibling With PWS: Insights from the FPWR Conference

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...

December 12, 2024 Read More

Topics: Research, Parents

The Matesevac Family Welcomes You to Atlanta this September!

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...

August 6, 2024 Read More

Topics: Parents

FPWR 2024 Family Conference: Deep Dive Workshops

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...

July 17, 2024 Read More

Topics: Parents, Adults, Children 0-3, Children 3-6

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

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...

July 10, 2024 Read More

Topics: Stories of Hope, Parents

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

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...

June 25, 2024 Read More

Topics: Stories of Hope, Parents

Foundation for Prader-Willi Blog | Parents

Categories

New Resource for Parents: Helping Siblings Thrive in a PWS Family

Help Drive Progress: Become an Advocate Reviewer for PWS Research

Planning for the Future: Estate and Insurance Insights for Families

Navigating PWS: Stories, Strategies, and Insights from the FPWR Conference

Growing Up With a Sibling With PWS: Insights from the FPWR Conference

The Matesevac Family Welcomes You to Atlanta this September!

FPWR 2024 Family Conference: Deep Dive Workshops

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

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