Effective advocacy educates our family, friends, and researchers about Prader-Willi syndrome. Advocates also spread PWS awareness throughout the community. Here are a few resources to help you advocate for PWS and the Foundation for Prader-Willi Research. There is also information how to get involved and be an advocate reviewer in FPWR’s research grant program.
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.
Download and print this one-page FPWR Flyer to take with you and share!
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?
- Donations by check or credit: https://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: https://www.fpwr.org/events
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 2013 alone, FPWR:
- Awarded more than $1 million to accelerate high-impact PWS research
- Supported 18 PWS Projects and initiatives in 7 countries
- Saw 16 FPWR supported studies published in scientific journals
- Supported four research conferences that promoted collaboration between top scientists around the world.
- Received support from 11,000 donors!
BECOME AN ADVOCATE REVIEWER FOR OUR GRANT PROGRAM
Grant applications undergo a rigorous review process to make award decision. In addition to scientific experts, proposals are also reviewed by advocates from the PWS community (parents, friends and other family member). A brief description of the advocate review process is below. If you are interested in participating, please contact Associate Director of Research Programs, Jessica Bohonowych at: firstname.lastname@example.org
In general, advocate reviewers are paired up and receive a total of 4-6 grants. You and your partner will read all the same proposals, communicate/discuss and then each be responsible for submitting a written review for half of them. Each grant proposal contains ~5 pages of the specific research plan along with other pages of supporting materials.
The advocate reviewer role is to provide a critique as to whether the research addresses a highly valued question in the PWS community, the impact that the research would have on the PWS community, and the potential improvement to quality of life of those with PWS.
For details on the advocate review criteria, click here. Your review comments would usually be the equivalent of 1-2 pages in total length.
For background and reference information on current topics in PWS research, we would encourage you to explore the FPWR website and learn about our currently funded projects as well as read some of the recent posts on the research blog.