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Foundation for Prader-Willi Blog | Research

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...

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...

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—...

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...

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 ...

Topics: Therapeutic Development, Research, SYS

FPWR Announces 2nd Round of 2024 Grants

We are pleased to announce the recipients of our second round of grants for 2024, totaling $1,681,781 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing research in Prader-Willi syndrome (PWS) and ...

Topics: Research, SYS

Blood Clots in PWS: Risk Factors, Signs & Symptoms

Although rare overall, people with PWS have a higher risk for developing dangerous blood clots than the general population. A blood clot is a mass of blood that has changed from its liquid state into a semi-solid or gel-like form.

Topics: Research

How Should I Talk with My Child About Their PWS Diagnosis?

How should I talk with my child about their PWS diagnosis? This is a question many parents ask as their child grows and differences between them and their typical peers may become more apparent. Will discussing the PWS diagnosis empower their child t...

Topics: Research

2024 FPWR PWS/SYS Research Symposium Retrospective

In September, we were honored to host our annual meeting of researchers, physicians, and pharmaceutical companies interested in Prader-Willi or Schaaf-Yang syndromes. This event is consistently invigorating as the leaders in PWS/SYS research not only...

Topics: Research, Learning