May Is PWS Awareness Month

You Can Help Bring Awareness to Prader-Willi Syndrome!



May was established 'PWS Awareness Month' in 2019 when the House of Representatives passed Resolution 55. PWS Awareness Month is an opportunity for us to come together as a community, show our unity and strength, and help educate the world on PWS and our need for continued research to find treatments. Will you help us raise awareness of Prader-Willi syndrome and the need for treatments and a cure? Let us help you get started!

Learn More About PWS

Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.

Watch this short video to learn more about PWS, then click here to learn more >>

3 Things To Do this Month

  • Help spread awareness with our daily PWS facts.
    We have put together daily facts that will be shared daily on FB and Instagram. You can also sign up for our daily email and receive our facts directly to your inbox! Sign up for our daily facts >>

    Spend time on Zoom? Use our Zoom background and share PWS awareness while you work! (Right-click to save the image). 

    PWS Awareness Zoom Background (1)

  • Complete surveys in the Global PWS Registry.
    As a general standard, the FDA requires positive results in 2 controlled studies, or 1 well-controlled study with confirmatory evidence, such as natural history data from the Global PWS Registry. We need the PWS community to continue to complete surveys in the Registry to ensure we have the most complete, and up-to-date data set that reflects the entire PWS population. Visit the registry today >>

  • Fundraise or donate to support our research efforts.
    Everything we do, we can do because of YOU. Nearly every dollar we have for research has come from affected families and their networks of relatives, friends, colleagues, and neighbors. Do you want treatments, and a cure, for PWS? If so, we invite you to join Team FPWR and play a vital role by fundraising for PWS research. Fundraise >> or Donate >>  to support our efforts.


Fact Sign UP

Sign up for our awareness month emails and you will receive a daily graphic with a PWS-related fact to help spread awareness!

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Daily Facts!

Spread Awareness While Raising Critical Funds for PWS Research!

Imagine a world where PWS doesn't hold back the dreams of our loved ones. You can help make it a reality. This May, a generous donor is matching all gifts up to $150,000, making it a great time to advocate through fundraising! Plus, for every $1,000 you raise between now and June 1, you'll receive a chance to win a pair of FPWR Conference tickets in Atlanta, September 27-28.

Why Should I Help Raise Funds for PWS Research?

  • Raise Awareness: Heightened awareness leads to increased advocacy, reduces isolation, educates others, and fosters community.
  • Advance Treatments: Funds raised support vital research, including 3 important clinical trials: ARD-101, a potential new treatment for hyperphagia, VNS4PWS, a new therapy to reduce outbursts, and PWS Smart Start, a behavior intervention for caregivers.
  • Promote a Brighter Future: Your participation empowers our community, fostering a sense of hope and resilience. Together, we can support those with PWS and SYS, and show the strength of our small but mighty community!

How Do I Start Fundraising?

No experience necessary! One of the easiest ways to launch a customized fundraising page in minutes is by clicking here >> Become a Fundraiser, or, simply set up a Facebook fundraiser! Check out our fundraising resource page for templates, customizable graphics, and more!

Fundraising Toolkit Graphic




Download the
What Is PWS?
Fact Sheet


You Can Advocate for PWS 365 Days a Year!


Are you a parent or caregiver of a person with PWS? The #1 activity you can do to help advocate for your loved one is to participate in the Global PWS Registry. The Global PWS Registry is a powerful tool for the PWS community to advance understanding of PWS, areas of unmet need, standards of care, and new therapies. Data from the registry is shared back to the PWS community, used by researchers and scientists to advance PWS research, and has been the basis of our discussions with the FDA as we help them understand our community's need for treatments.

We encourage you to enroll in the registry and update your surveys annually. Get started today!

PWS global registry