May is PWS Awareness Month!

We believe an independent future is possible.

We’ve come a long way since our first PWS awareness month! 12 years ago, when the House passed Resolution 55 establishing May as PWS awareness month, there were no potential treatments on the horizon. For the first time in history, we have completed TWO PWS clinical trials and data from these studies are now being prepared for submission to the FDA. Advocating on behalf of our loved ones with PWS and spreading PWS awareness has never been more important than it is today! 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. What can you do?

3 Things To Do This Month 

  • Share 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 >>
  • 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 members of the PWS community to continue to complete surveys in the Registry so that we have a robust data set that reflects the entire PWS population. Visit the registry today >>
  • Fundraise/Donate to support our advocacy and research efforts. Everything we do, we can do because of YOU. Since our launch in 2003, we have invested over $16M into groundbreaking research. Nearly every dollar 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 joinTeam FPWR and to play a vital role by fundraising for PWS research. Fundraise >> or Donate >> to support our efforts.


FUNDRAISE 

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When you set up a fundraising page, 
it's easy to reach out to family and friends!


DONATE 

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Support our 5-year research plan to develop new treatments for PWS.


SHARE

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Sign up for our awareness month emails and receive a daily, shareable PWS Fact.


Story of Hope

A Glimpse Into the Life of a High School Senior, Who Also Has PWS.

By guest blogger Gillian Segall, 18 years

gillian5Graduating from high school is something that many kids and their parents take for granted. But I’m a kid with Prader-Willi Syndrome so my journey has been full of ups and downs. The “ups” have been amazing: I will be graduating in May, made my high school honor society, was named a “True Giant” for making my school a better place, and also qualified for state Special Olympics in swimming. But the “downs” have made it really hard to get here.

One of my biggest challenges was learning how to ... Read More >>


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. Learn more >>


Receive A Daily PWS Fact By Email 

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

Fact Sign UP

GET PWS AWARENESS MONTH EMAILS


Our Message of Hope

 


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!


The 15 for 15 Challenge

You can help support research this year while improving your own health and wellbeing. Join us in supporting health and fitness with our 15 for 15 Challenge! Learn more >>

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Featured Video



 

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Find more PWS resources here!


Advocacy In Action

In the Spring of 2021 FPWR and PWSA |USA submitted a petition letter including the responses of 26,640 community supporters asking the FDA to apply regulatory flexibility in their review of new treatments for PWS. Read our letter to the FDA and download the full community response >>

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Mark Your Calendars!

Join us on Thursday, May 13th, for a fun and interactive mixology experience! Your $45 registration allows your household access to a 90-minute virtual mixology course with expert, Rebecca Pinnell, who will lead us through the creation of 2 spring fling-themed cocktails! Learn more and register today >>

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Customize Your Facebook Pic!

1-1Spread awareness with our Facebook Profile Frame! Here's how:

  • Hover over your profile picture
  • Click "update profile picture." 
  • Click "add frame"  & search for "PWS Awareness Month".
  • Choose your frame


Let's Play PWS Fundraiser Bingo!

Complete 1 BINGO and receive an FPWR sticker in the mail. Complete the entire BINGO page and receive an exclusive FPWR Gaiter and Cooling Towel!

Download your bingo card and instructions here >>