United in Action campaign kicks off PWS Awareness Month
Initiative aims to turn everyday connections into meaningful support
Written by |
May is Prader-Willi Syndrome (PWS) awareness month, offering families and advocates an opportunity to raise visibility, share experiences, and drive change for those affected by the disease.
Through the United in Action initiative, launched by the PWS Association USA (PWSA USA), supporters are encouraged to turn everyday connections — with friends, neighbors, and coworkers — into meaningful awareness and fundraising efforts that strengthen support systems for people with PWS.
At the heart of the campaign is the idea that awareness can start close to home. By creating a personal fundraising page, sharing a story on social media, or simply talking about PWS in their communities, individuals can help expand awareness and strengthen the resources and connections that the PWS community deserves.
“One state. One family. One moment at a time,” PWSA USA writes on the initiative’s webpage. “United in Action is about more than awareness. It’s about fostering hope, building real connections, and creating a ripple effect of support that spreads across the country. Together, we can make sure no family feels invisible and no story goes unheard.”
Raising awareness on social media, within communities
The association also offers several other ways to get involved. It has created graphics to help supporters raise awareness on social media and within their communities, including profile photos, flyers, and a printable yard sign.
It also provides PWS merchandise, including clothes, tote bags, water bottles, and coffee mugs, as well as a PWS Facts Toolkit with information to educate others about the condition. The association is also hosting a Spring Brunch Fundraiser on May 16 in Colorado Springs.
Another key feature of the awareness month campaign is the Spotlight on PWS initiative, which invites families to share real-life moments — both joyful and challenging. Whether it’s celebrating a milestone or disclosing daily struggles, these stories help humanize the condition and build a sense of connection across the community.
Awareness month is also a time to boost advocacy, and supporters are invited to contact elected officials and request official proclamations of PWS Awareness Day on May 15 in their city or state. These efforts ensure that PWS remains visible to policymakers who can influence funding, research, and access to care.
D.C. Fly-In advocates for change on Capitol Hill
Along those lines, PWSA USA is gathering the PWS community to Washington, D.C., for the 2026 D.C. Fly-In, scheduled for May 4 to 6 at the Yours Truly DC Hotel. The event will bring together nearly 200 individuals with PWS, parents, caregivers, and industry partners to advocate for change on Capitol Hill.
On May 5, attendees will participate in a preparation session with PWSA USA staff and expert speakers covering three legislative asks, which will be presented to members of Congress on May 6. Those who are not present can follow the events via Facebook Live on May 5.
One legislative ask is Supporting Funding and Report Language in fiscal year 2027 for the Rare Disease Innovation Hub, which is designed to enhance collaboration across the U.S. Food and Drug Administration to address scientific, clinical, and policy issues related to rare diseases. The request is for $5 million to support the hub’s work and implementation.
A second request, the Genomic Answers for Children’s Health Act (H.R. 7118), aims to clarify Medicaid coverage of genomic sequencing, inform stakeholders about the new policy, and report to Congress on implementation challenges and recommendations for improvement.
A third ask, KASSA (Keeping All Students Safe Act)/Federal Education Landscape, would limit the use of restraints and prohibit the isolation of students at school as part of a child’s educational program.
The U.S.-based Foundation for Prader-Willi Research (FPWR) also offers several ways to get involved this month. It’s encouraging community members to sign up for its daily PWS facts emails, update their social media profile picture, and participate in the Global PWS Registry. It also provides resources to help members launch fundraising pages and includes an awareness toolkit.
Worldwide, FPWR UK and the PWSA UK are preparing for PWS Awareness Day through their collaborative initiative PWS Stronger Together. They are asking schools to ‘Go orange for PWS’ by inviting pupils to wear something orange on that day and donate £1 ($1.35) to PWS Stronger Together. Families and other PWS providers are also invited to wear something orange, host an event, or start a fundraiser.
Other FPWR UK events during the month include 10k and half-marathon races in three cities to raise funds for PWS research and support for families.
