One meaningful way you can get involved with the Foundation for Prader-Willi Research is by serving as a Community Advocate Reviewer for our research grant program.
Every grant application that goes through FPWR's review process is evaluated by both scientific experts and members of the PWS community. This collaborative review process helps ensure that the research we fund is not only scientifically rigorous, but also addresses the needs and priorities of individuals with PWS and their families.
The grant selection process at FPWR is based on a collaborative approach, with scientists and parent advocates both playing critical roles.
Scientific reviewers evaluate whether a project is well designed, feasible, and likely to advance the field. Community Advocate Reviewers bring a different—but equally important—perspective by considering questions such as:
- Does this research address an important need for people with PWS?
- Could the findings meaningfully improve quality of life or advance treatment?
- Is this a project the PWS community believes is worth investing in?
By combining scientific expertise with lived experience, FPWR makes more informed funding decisions and invests donor dollars where they can have the greatest impact.
After all, a proposed research project might be terrific science, but if it isn’t relevant to what people with PWS and their families feel is important, then it's not our project to fund.
What to Expect
Advocate reviewers typically work in pairs and review 4–6 grant applications during each funding cycle. Each proposal includes approximately five pages describing the research plan, along with supporting materials. You and your review partner will discuss each proposal together before each submitting written evaluations for a portion of the applications.
You are not expected to evaluate the scientific methods. Scientific reviewers assess the technical aspects of each proposal so you may assume that the science is sound. Advocate reviewers do not need to conduct any outside research; rather, they draw on their own experiences and consider how the broader PWS community would view the project's importance and potential impact.
Learn About Current PWS Research
For background and reference information on current topics in PWS research, we encourage you to explore the FPWR website to learn about our currently funded projects and read some of the recent posts on the research blog. This will help you better understand today's research landscape and the opportunities that lie ahead.
Interested in Becoming an Advocate Reviewer?
Community Advocate Reviewers play an essential role in helping FPWR identify the research that matters most to families. If you are interested in participating in a future grant review cycle, please contact Caroline Vrana-Diaz, Research Project Coordinator, at caroline@fpwr.org.
You can also review the Community Advocate Review Evaluation Criteria (here)to learn more about the process and expectations.
