Home > You Can Spread Awareness for Prader-Willi Syndrome

Thank you for joining our PWS community and helping us raise awareness for PWS Research!

  Prader-Will Syndrome Awareness Month

  Fundraising Ideas  –  Awareness ResourcesSocial Media Graphics


Effective advocacy educates our family and friends about Prader-Willi syndrome and spreads awareness throughout the community. How can you introduce your network to Prader-Willi syndrome and the work of our Foundation?

Elevator Speech: A quick, 30 second introduction to our cause.

Prader-Willi syndrome is a rare, non-inherited genetic disorder affecting approximately 1 in 15,000 people. Nearly every system in the body is affected by a PWS diagnosis but the hallmark symptom is extreme hunger. A person with PWS never feels full. To make matters worse, this is coupled with a slow metabolism where the person with PWS only needs about 60% of the calories of their typical peers. Other common symptoms include behavioral challenges, obsessive compulsive disorder, anxiety, sleep problems, scoliosis, and the list goes on! The Foundation for Prader-Willi Research is working to eliminate the challenges of Prader-Willi syndrome through the advancement of research. We support cutting edge research studies around the world to advance the understanding of PWS, and collaborate with research institutions, pharmaceutical companies and the FDA to develop new treatments that will help our kids.  To date, FPWR has funded over $6 Million in PWS research.

We asked our parents, if you could go back in time to the day of your child’s diagnosis, what would you tell yourself about having a child with PWS?

 

Fundraising and Awareness Activity Ideas

  • Take One SMALL Step and create a personal fundraising page! Create and customize your very own fundraising page, then share it with your family and friends to raise funds for Prader-Willi Research.
  • ‘Ditch Your Lunch’ for PWS.  Participating is easy!  Choose one day this month to skip your lunch in honor of your loved one with PWS. Ask your friends, family and co-workers to join you and make a donation of the amount you would have spent on your meal to PWS research.
  • Host a garage sale benefitting PWS research! You can put your spring cleaning to good use and gather items for a yard/garage. Use this flyer to help gather additional items for your sale.
  • Put out a donation jar. Ask your local businesses if they will put out a collection jar for PWS research for the month of May.
  • Offer a jeans day at school or work and encourage participants to make a small donation. Jeans Day Request.
Need some more ideas to help you get started? Watch this short webinar: FPWR Fundraising Share and Brainstorm Session.


Awareness Resources

Use these resources to help others better understand Prader-Willi syndrome and the mission of the Foundation for Prader-Willi Research.

Social Media Graphics

Click, save, and post these brand new PWS Awareness Month images on your social media accounts to share them with your family and friends!
  FREQUENTLY ASKED QUESTIONS: Who is affected by PWS? It is estimated that the disorder affects one in 15,000 births and equally affects males and females, and all ethnicities.  There is currently no “cure” for PWS. PWS is a spectrum disorder meaning symptoms and severity can vary greatly for each individual and develop, and become more complex, over time. Is FPWR a non-profit organization? Yes, The Foundation for Prader-Willi Resarch is a U.S. 501c3 non-profit organization. Federal Tax ID# 31-1763110. Donations to FPWR are tax-deductible to the fullest extent of the law. How does FPWR raise funds? FPWR relies on the generosity of individual donors, volunteer fundraisers, corporate sponsors and other community partners. FPWR special events are held nearly every day all over the country! Visit: fpwr.org/events for more information Our signature One Small Step events are produced by volunteers in their communities. These fun, family friendly events promote health and fitness while raising much-needed funds and educating communities on the challenges faced by families dealing with PWS.  In 2013, One Small Step events raised more than $1.3 Million dollars for PWS research! To learn more: http://onesmallstep.fpwr.org How much of my donation will go to research? In 2013, 82% of every dollar donated went directly to promising research projects! FPWR leverages technology to support our operations and keep our overhead costs to a minimum. Our small team of expert professionals are spread across the country and supported by the dedication of hundreds of volunteers, including our board of directors, scientific advisory board members, event hosts, and advocates. How May I Contribute? How are grants awarded? Who decides where my donation goes? The Foundation for Prader-Willi Research has a professionally managed grant process that selects projects based on the collaborative input of both scientists and parents.  FPWR chooses projects that are both scientifically sound and highly relevant for individuals with Prader-Willi syndrome and their families. FPWR’s grant process is overseen by a Scientific Advisory Board, which has established a twice yearly proposal process and criteria review and selection of projects. How many research projects has the Foundation sponsored to date? Since 2003, FPWR has funded over 90 research grants and initiatives. Is FPWR Successful? Will my support be a good investment? Our Foundation has seen exponential growth in recent years. In 2015 alone, FPWR:
  • Awarded $2 million to accelerate high-impact PWS research
  • Supported 20 PWS Projects and initiatives in 7 countries
  • Saw 22 FPWR supported studies published in scientific journals
  • Supported 3 research conferences that promoted collaboration between top scientists around the world.
  • Received support from over 7,000 donors!

 

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