Supporters poised to observe PWS Awareness Month in May

The U.S. PWS Association is offering 15 ways to call attention to the disease

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by Mary Chapman |

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Prader-Willi syndrome (PWS) Awareness Month happens every May to celebrate the global PWS community and call attention to its needs and there are a host of ways to participate this year.

The goal is to heighten PWS awareness among lawmakers, scientists, public authorities, health professionals, and the general public. PWS is thought to affect between one in 10,000 to one in 30,000 people worldwide.

PWS is a rare genetic disease caused by the loss of or defects in paternal genes in a region of chromosome 15 that control sleep, metabolism, appetite, growth, intellectual skills, and social behavior. The condition is marked by weak muscles, slow growth, low sex hormones, and a constant and insatiable appetite.

For its part, the Prader-Willi Syndrome Association USA (PWSA USA) is again offering 15 ways to raise awareness for PWS.

For one, supporters are asked to illuminate their home with the organization’s colors — purple, pink, blue, and green — and send photos of the display to the association at [email protected] so they can be shared. They’re also encouraged to press their elected officials to support issues of importance to the PWS community, and to speak about PWS at a local library, civic group, school, or community organization.

Parents are invited to share their story by relating their PWS journey either in a video recording they create or as part of a Zoom interview with the association.

Other ways participants can get involved include sharing facts from the PWS Facts Toolkit or sending a video of themselves or their loved one with PWS saying “hope” and the slogan “United in Hope!” The organization will share the videos on their social media platforms.

Supporters can also leave materials about PWS and the organization with a local neonatal intensive care unit to help families with a recent diagnosis. Those with a loved one with PWS are asked to consider becoming a family mentor to help those who’ve been newly diagnosed. Send an email to [email protected] for more information.

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Families can write a PWS opinion piece for their local newspaper and reach out to their healthcare team members in appreciation. Yet another way to get involved is to become a volunteer at the PWS Association, which was formed in 1975 to enhance the quality of life of those affected by the disease.

Supporters can also get their workplace, school, or community group to host a “Wear Jeans for Rare Genes” event wherein participants don denim and donate as little as $1. For more information, write to [email protected]

The association is also inviting grandparents and siblings to join its private PWS Facebook pages so they can remain informed and feel supported.

And it’s seeking nominations for its “Spotlight on PWS Awareness” effort where community members who go the extra mile to raise awareness will be recognized. It also has downloadable materials such as a Facebook cover and photo profile graphic, along with facts and FAQs about PWS.

Elsewhere, PWSA UK in the U.K. is asking supporters to “Go Orange” for PWS Day, which falls on May 26 there this year.

The Foundation for Prader-Willi Research is asking supporters to share PWS facts, complete surveys in the Global Prader-Willi Syndrome Registry, and raise funds or make a donation toward research efforts.

“We’ve come a long way since our first PWS awareness month! When the House passed Resolution 55 in 2019 establishing May as PWS awareness month, there were no potential treatments on the horizon. Today, we have nearly half a dozen treatments in clinical trials with more to come,” the foundation’s awareness month webpage reads. “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.”