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Foundation for Prader-Willi Blog | Schaaf-Yang Syndrome

FPWR Awards More Than $2.1 Million in Research Grants in 2025

We are pleased to announce the recipients of our second round of grants for 2025, totaling $925,117 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing innovative research and bold initiatives in Pr...

Topics: Research, Schaaf-Yang Syndrome

Inside the Cell: MAGEL2 Mislocalization and What It Means for SYS Research

What if the key to treating a rare genetic condition lies not just in whether a protein is present—but in where it ends up inside the cell? This is the case with the MAGEL2 protein, which plays a critical role in cell function and is missing or alter...

Topics: Research, Schaaf-Yang Syndrome

FPWR Announces 1st Round of 2025 Grants

We are pleased to announce the recipients of our first round of grants for 2025, totaling $1,198,949 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing research in Prader-Willi syndrome (PWS) and S...

Topics: Research, Schaaf-Yang Syndrome

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, Schaaf-Yang Syndrome

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, Schaaf-Yang Syndrome

FPWR Announces 1st Round of 2024 Grants

We are pleased to announce the recipients of our first round of grants for 2024, totaling more than $1,000,000 in awards, as part of the Foundation for Prader-Willi Research's (FPWR) ongoing commitment to advancing research in Prader-Willi (PWS) and ...

Topics: Research, Schaaf-Yang Syndrome

Understanding the Impact of Schaaf-Yang Syndrome from Caregiver Insights

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...

Topics: Research, Parents, Schaaf-Yang Syndrome

FPWR Announces 2nd Round of 2023 Grants

We are pleased to announce the recipients of the second round of grants for 2023, totaling $1,000,000 in awards, as part of the Foundation for Prader-Willi Research's (FPWR) ongoing commitment to advancing research in Prader-Willi (PWS) and Schaaf-Ya...

Topics: Research, Schaaf-Yang Syndrome

Partnership with CombinedBrain Establishes Biorepository for PWS & SYS

Biorepositories play a crucial role in rare disease research, serving as central locations for collecting, storing, and distributing samples such as tissues, blood, and cells. The Foundation for Prader-Willi Research, in partnership with COMBINEDBrai...

Topics: PWS People, Volunteer, Schaaf-Yang Syndrome