Foundation for Prader-Willi Blog (8)

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

"Growing Up with a Sibling with PWS," recorded at our 2024 Family Conference, is a heartfelt and detailed presentation that explores the experiences of siblings of children with Prader-Willi Syndrome (PWS). Led by Dr. Lauren Schwartz Roth, a research...

December 12, 2024 Read More

Topics: Research, Parents

Inside FPWR’S Research Program: An Interview with the Research Team

Welcome to an inside look at some of the impactful research FPWR is supporting to improve the lives of individuals with Prader-Willi syndrome (PWS). In this interview, four of our dedicated research team members—Theresa Strong, Marc Ridilla, Lisa Bur...

December 10, 2024 Read More

Topics: Research, Research Blog

Reflecting on 2024: A Year of Progress & Promise for the PWS Community

As 2024 draws to a close, we at the Foundation for Prader-Willi Research (FPWR) are reflecting on a year filled with progress, promise, and hope. This year’s achievements wouldn’t have been possible without the incredible dedication of our community—...

December 4, 2024 Read More

Topics: Research

Recap of the PWS-CLIC Meeting in Atlanta

The PWS-Clinical Investigation Collaborative (PWS-CLIC), a network of PWS clinical experts formally established in 2021 and supported by FPWR, held their annual meeting in Atlanta, Georgia, in conjunction with the FPWR Research Symposium and Family C...

November 26, 2024 Read More

Topics: Research

De-Risking Treatment Development: Paving the Way for Therapeutic Successes

The Foundation for Prader-Willi Research (FPWR) employs a "de-risking" funding strategy to accelerate the development of new treatments for Prader-Willi syndrome (PWS). We are here to take the risks, fund new ideas, and help build the resources that ...

November 19, 2024 Read More

Topics: Therapeutic Development, Research, Schaaf-Yang Syndrome

FPWR Blog

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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

Inside FPWR’S Research Program: An Interview with the Research Team

Reflecting on 2024: A Year of Progress & Promise for the PWS Community

Recap of the PWS-CLIC Meeting in Atlanta

De-Risking Treatment Development: Paving the Way for Therapeutic Successes

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