Thank you for joining our PWS community and helping us raise awareness for PWS Research!
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.
Awareness ResourcesUse these resources to help others better understand Prader-Willi syndrome and the mission of the Foundation for Prader-Willi Research.
Social Media GraphicsClick, save, and post these brand new PWS Awareness Month images on your social media accounts to share them with your family and friends!
- Donations by check or credit: http://www.fpwr.org/donate
- Donations of stock
- Find us on Amazon Smile and Ebay Giving Works
- Host a One Small Step Walk or other event
- Attend a fundraising event in your community: http://www.fpwr.org/events
- 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!