From Bingo to Fitness and Mixology, Activities Mark Awareness Month

From joining a mixology course to participating in fundraiser bingo, supporters globally are set to mark Prader-Willi Syndrome Awareness Month, observed each May.

Awareness and education are crucial to heightening the recognition, diagnosis, understanding, and management of Prader-Willi syndrome (PWS), a genetic disorder characterized by weak muscles, slow growth, low sex hormone levels, and an insatiable appetite. The rare disease is said to affect about one of every 15,000 births.

The aim is to raise awareness among the general public as well as policymakers, public authorities, industry representatives, scientists, and health professionals. Raising funds for research is also a key goal.

“Advocating on behalf of our loved ones with PWS has never been more important than it is today,” the Foundation for Prader-Willi Research states on an Awareness Month webpage. “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.”

To help spread the word, the organization is asking supporters to share on its social media platforms facts about the disease that it will post daily during May. Participants may also customize their Facebook photo with a PWS frame.

The foundation is also inviting community members to complete surveys in the Global PWS Registry, helping to create a robust dataset that reflects the PWS population. Such registries can be potent tools to better understand disease characteristics, conduct clinical trials more expeditiously, and determine areas of need in research.

Awareness Month participants are also asked to establish a fundraising page for family and friends, with proceeds going to PWS research. Ideas include hosting a chili cook-off or virtual party, organizing a kickball tournament, setting up a lemonade stand, or singing classic rock ballads for donations. Supporters may also consider asking for donations in honor or in memory of a loved one or caregiver. Participants who create a fundraising page may use tools from the foundation to get started.

Another way to support PWS is by joining its “15 for 15” health and fitness challenge. Some challenge ideas include running, biking, swimming, or walking over the course of 15 days; doing yoga for 15 minutes daily for 15 days; or completing 15 repetitions of an exercise each day for 15 days. For questions on how to get started, write to [email protected].

There’s also PWS Fundraiser Bingo, in which participants complete a single square daily. Completing the entire bingo page will earn a special cooling towel from the foundation. Each square contains directives including, “send thank you messages to each of your donors” and “invite your friends to join your fundraiser.”

On May 13, the organization will host a 90-minute virtual mixology course with expert Rebecca Pinnell, who will lead participants through the creation of a couple of Spring-themed cocktails. Registration is $45 for this Zoom event.

The foundation has downloadable resources available, including a coloring sheet, a PWS fact sheet about symptoms, causes, diagnosis, treatments, and research, and an Understanding PWS slide deck.

For the month, the foundation is also featuring guest blogger and PWS patient Gillian Segall, who made her high school honor society and qualified for the Special Olympics swimming team for Illinois, her home state, in 2019. “My team is a combination of my guidance counselor, classroom aide, extracurricular aide, case manager, social worker, and parents,” she wrote. “They help me navigate my school work, social situations, and all the complicated food situations.”

Elsewhere, the Prader-Willi Syndrome Association UK is focusing on “getting active” during the month. The organization is encouraging supporters to join a virtual Round Britain Relay to raise funds. The aim is for the community to complete 2,992 miles — an estimated 7,063,080 steps for those who plan to walk.