You Do You! New 'Take Action' PWS Fundraising Tool

you-do-you-new-take-action-pws-fundraising-tool.pngWhen it comes to fundraising for PWS research, I've got good news, and I've got good news: First, in 2017, our community raised $3,200,000 for PWS research! Thanks to everyone who fundraised or supported a fundraiser, last year FPWR funded 18 research grants, 2 novel drugs, 2 medical devices, 4 clinical trials, 6 models of PWS! 

Now for the good news: to kick off 2018, we've launched a new Take Action page on our website to give you more ways to support PWS research, including:

  • Birthday or other celebration: Dedicate your special day to PWS research and encourage your friends and loved ones support PWS research!
  • Honor & memorial: Recognize someone special or honor the memory of a loved one by setting up a donation page.
  • Special eventHost a chili cook-off, kickball tournament, 80's rock ballad karaoke party — get creative!
  • Running with Team FPWR: Runners from around the world are joining together to raise funds and awareness for PWS research in 2018. Join us for a Rock ‘n’ Roll event anywhere in the U.S., with 5k,10k, half and full marathons to select from. You can even run the NYC marathon!
  • One SMALL Step: A fresh look and improved features make walk-based fundraising even easier, whether you're hosting a walk, joining a team, or simply creating a fundraising page!
  • DIY FundraisingTake action doing what you love, whatever it is! Music, cooking, climbing a mountain, you name it!

We launched this new tool because our community has always been incredibly creative in finding their own unique ways to support PWS research. But in the past we haven't had one platform that helps "you do you." Take Action brings it all together into one easy portal. If you have a fundraising idea, we can support you! Go to the Take Action for PWS Research page get started!

Your Fundraising Supports ...

Since 2003, with the support of thousands of donors and fundraisers, FPWR has invested more than $10 million into PWS research. We've energized the field of PWS research, developed tools that have been used in labs around the world and have attracted nearly a dozen PWS clinical trials.

2017 Review Infographic (3)

We have much to be proud of in our accomplishments, but much work left to do. When you fundraise for FPWR, your dollars enable us to:

  • Support innovative gene therapy research
  • Investigate novel PWS treatments
  • Improve clinical trial measures
  • Develop new models of PWS
  • Generate critical knowledge of PWS
  • Develop new therapeutic approaches
  • Repurpose existing drugs for use in PWS
  • Support our newly established clinical care program
  • And more!

FPWR is working actively with stakeholders (industry, the FDA, university researchers and patients) to move as many new therapies through clinical trials, and into the hands of patients, as possible. Our research program supports projects which will allow us to gain a better understanding of this complex syndrome, develop tools and resources to advance PWS research and to investigate potential therapeutics to treat the many challenges of PWS. Already in 2018 we've gotten word of a promising new drug development for PWS.

We're thrilled by the progress we made in 2017 with the help of our PWS community, and of the possibilities that lie ahead. If you're ready to Take Action for PWS research, click here!

take action for pws research fundraising tool

Topics: News

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.