Worldwide PWS community to make way for awareness month
May is PWS Awareness Month; in US, May 15 is PWS Awareness Day
May is Prader-Willi Syndrome (PWS) Awareness Month and the worldwide PWS community is coming together to spread awareness about the rare genetic condition.
Also, May 15 is PWS Awareness Day in the U.S.
The Prader-Willi Syndrome Association USA (PWSA USA) is encouraging the community to engage in 15 ways to raise awareness in May, everything from calling elected officials to connecting with other families affected by PWS.
Supporters are also encouraged to spread the word by wearing PWS-branded clothes and other swag, along with sharing success stories of a loved one living with PWS via their Spotlight on Hope series. The association provides a PWS facts toolkit to help community members raise awareness in their community and on social media.
PWS is a genetic disorder caused by a loss of genes on chromosome 15, and is marked by symptoms that include distinctive physical characteristics, increased appetite, and abnormal behaviors.
Marking PWS awareness
Fundraising is another way to take action and support the PWS community and PWSA USA is inviting people to create a Hope United fundraiser.
New this year is the United We Brunch initiative, which seeks to bring people in the PWS community together and raise awareness and funds via a meal. There’s no limit or rules; brunch can be as formal or informal as each host desires. Those interested in hosting a United We Brunch event can find more info on the initiative’s toolkit.
PWSA USA is also hosting a Hope United 5K & Family Fun Run on May 3 at 9 a.m. at Greater Wilson Rotary Park in Wilson, North Carolina. A free webinar focused on creating financial stability for a loved one with PWS will be held May 14 at 12 p.m. ET.
The U.S.-based Foundation for Prader-Willi Research (FPWR) also offers several ways to get involved this month. It’s created an awareness toolkit, is encouraging community members to sign up for its daily PWS facts, and provides resources to help members launch fundraising pages.
Among the many scheduled fundraising events this month are golf tournaments, walks, and parties.
In addition to awareness and fundraising, the foundation is encouraging people affected by PWS to complete surveys for the Global PWS Registry, an international effort that’s collecting data on PWS to help advance research and aid in developing new treatment strategies.
FPWR is also hosting a “What’s Happening in Research” webinar on May 13 at 1:30 p.m. EST.
Across the pond, the Foundation for Prader-Willi Research UK (PWSA UK) and the Prader-Willi Syndrome Association UK are preparing for PWS awareness through their collaborative initiative PWS Stronger Together.
With their Move It May initiative, the organizations are encouraging the PWS community to get moving for at least 15 minutes each day. The initiative provides videos to help guide exercises and those interested are encouraged to share their activities on social media using hashtags #MoveItMay, #PWSStrongerTogether, and #GlowOrangeForPWS, along with tagging the group @PWS_Stronger_Together.
The PWSA UK is also asking supporters to “Go Orange,” the color of PWS, for PWS Awareness Day, which falls on May 30 in the U.K. this year.
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