PWS Supporters Encouraged to Share Stories, Raise Funds for Awareness Month in May

Inês Martins, PhD avatar

by Inês Martins, PhD |

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PWS and family life

This May, the Foundation for Prader-Willi Research (FPWR) is mobilizing people around the world affected by Prader-Willi syndrome (PWS) to raise awareness about the disease and host fundraising activities to advance disease research.

This year’s PWS Awareness Month came to be thanks to the efforts of Republican Congressman Ed Royce and Democratic Congresswoman Jane Harman, who co-sponsored the House Resolution that passed in December 2009, and then in the Senate in May 2010.

“This important resolution marked a real turning point in the fight against PWS,” Lauren Schwartz Roth, PhD, former president of the FPWR, said in a foundation blog post.

“In addition to establishing an awareness month, the resolution recognizes the importance of awareness and early diagnosis and recognizes the efforts and commitment of patient advocacy groups such as the FPWR,” she added. “We are deeply appreciative to Reps. Royce and Harman for their hard work and support.”

The campaign this year is about hope. The FPWR is asking people to show their support by fundraising, donating, and raising awareness about PWS.

Those interested in participating can do so by customizing their Facebook profile photo with the “I Love Someone With PWS” profile frame, using the hashtag #PWSawareness, or signing up for PWS Awareness Month emails to receive a PWS fact each day during May.

Other activities suggested by the FPWR include the One Small Step bingo card, in which participants are asked to create a Facebook fundraising page, share their story on that page, encourage friends to donate, share tips about the disease, among other activities. For each card completed, participants receive a “Live Life Full” T-shirt and may win one of 10 swag bags.

People can also support research while improving their own health with the foundation’s 15 for 15 Challenge. The idea is to set an exercise goal, such as running or doing yoga for 15 minutes, and do that every day for 15 days. During that time, participants are encouraged to make a donation and ask others to contribute to FPWR.

Additional suggestions include skipping lunch and donating the lunch money to PWS research, giving a presentation about the disorder, staying updated about clinical trials, and enrolling in the Global PWS Registry.

For more information about PWS Awareness Month and how to participate, click here.