15 Ways – and More – to Celebrate PWS Awareness Month This May

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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The word awareness is surrounded by red ribbons.

This year’s Prader-Willi syndrome (PWS) Awareness Month has launched, and will be celebrated with several educational and fundraising initiatives worldwide throughout May.

Advocates will use the month-long event to raise awareness of the rare disease in the general community, and also among healthcare professionals, lawmakers, and researchers. The aim is to better advance care for people with PWS.

“PWS Awareness Month is an opportunity for us to come together as a community, show our unity and strength, and help educate the world on PWS and our need for continued research,” the Foundation For Prader-Willi Research (FPWR) states on an awareness month webpage, asking, “What can you do to advocate for PWS?

To help those interested to come up with ways to advocate for PWS, the Prader-Willi Syndrome Association USA (PWSA USA) has provided a list of 15 ways to raise awareness.

Such ways include sharing facts from the PWS facts toolkit or using an awareness month social media graphic, which can be accessed on the association’s event website.

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The FPWR also is offering resources that include a daily PWS fact, a coloring sheet about the disorder, and an understanding PWS slide deck, which participants are encouraged to use to spread awareness. These resources can be accessed on the event webpage.

Patients and caregivers are invited to share their stories, either by submitting an article and photos or recording a video of themselves or friends or family members that raises awareness.

Members of the PWS community also are encouraged to complete surveys in the Global PWS Registry, which is collecting data from PWS families with the goal of advancing research — and, these families hope, the approval of potential new treatments.

In an effort to spotlight those who show a commitment to raising awareness about the genetic disorder, PWSA USA is asking individuals to submit the names and stories of people they know who regularly engage in awareness efforts. Such actions could include sharing their story or PWS information on social media, hosting a podcast, or organizing events to support the PWS community.

Another goal of PWS Awareness Month is to raise funds for research and advocacy. On its list, PWSA USA suggests participating in a “Wear Jeans for Rare Genes” fundraiser. The fundraiser involves asking an organization that usually has a dress code — like one’s employer, child’s school, or place of worship — to spread awareness by hosting a “dress down” day in which interested participants can donate to PWSA USA and dress casually for the day. Materials for the fundraiser can be accessed on the website.

Individuals can also donate or start a fundraiser through FPWR. On its site, FPWR offers fundraising ideas such as an athletic challenge, lemonade stand, or a collection in honor or memory of a loved one.

Merchandise for PWS awareness month, including mugs, totes, and t-shirts, also can be purchased on the website.

Elsewhere, the PWSA of the U.K. is organizing events like family weekends and walks at various locations in Great Britain throughout the month. More information can be found here. This year marks PWSA U.K.’s 40th anniversary, with additional events planned throughout the year.

Over the years, PWS Awareness Month has been a catalyst for advancing new treatments and research, advocates say. When U.S. legislators formally established PWS Awareness Month in 2019, no new treatments for the disease were within sight. Now, there are “nearly half a dozen treatments in clinical trials with more to come,” FPWR says.

Additional awareness month activities can be found on the two nonprofits’ events webpages. While many of these awareness and fundraising efforts are highlighted for May, several can be completed all year long.