As PWS Awareness Month comes to a close, we want to send you (or rather, shout it from the rooftops) a special THANK YOU for all of your incredible awareness efforts! We are spreading awareness of PWS into our schools, our communities, workplaces, medical facilities, libraries, government offices, and on media platforms all over the world. For a syndrome that was only officially “discovered” in 1956, we have come a long way! Prader-Willi syndrome is coming closer and closer to being a household name, and we are so grateful for your part in spreading awareness. So, to every family in our community, whether you shared a post, told a friend, gave PWS information to your doctor, spoke at school, or met with your congressional representative, and other the other creative ways you shared our stories, thank you.
We honor all of your awareness efforts. No action is too small; no voice is too quiet. Below are some ways that families in our community participated in PWS Awareness Month 2026.
Ayoni’s Story:
On May 15, PWS Awareness Day, the Rao family hosted a watch party for their episode on the Medical Story YouTube channel, that shares their family’s journey with a late diagnosis of PWS for their daughter, Ayoni.
“There’s nothing scarier than receiving a diagnosis for your child. And on that day, we felt alone, scared, guilty and even ashamed. We don’t want anyone to think they are alone. That’s why I’m so grateful that we participated in the PBS Emmy award winning docuseries, ‘Medical Stories’ that helps educate and remove the stigma about these diagnoses. We wanted to share Ayoni’s journey with PWS, so that more families can receive a diagnosis, access to care, and compassion from community members. We hope you’ll see yourselves in this story and feel more seen by it.” – Dini Rao, mom to Ayoni
Watch Ayoni’s Story on YouTube at PWS | Medical Stories
Light Up for PWS:
PWS mom Kayla Day successfully arranged for the Pennsylvania State Capitol to be lit orange from May 11-13, 2026, in recognition of PWS Awareness Month. Orange light illuminating one of the state’s most iconic landmarks is a powerful visual reminder that the PWS community is here, and that our voices are being heard.
Rare Disease Advocacy Council and Proclamation Month:
Our own Director of Development, Melanie Zalman (mom to Josephine (7) living with PWS), was officially appointed by Governor Kelly Ayotte to serve on the New Hampshire Rare Disease Advisory Council (RDAC). Melanie also helped to secure a proclamation from the governor of New Hampshire, proclaiming May as PWS Awareness Month.
Read more about Melanie’s appointment and how you can seek a proclamation in your own city or state at Advocacy in New Hampshire: RDAC Appointment of Melanie Zalman, Awareness Day Proclamation – Prader-Willi Syndrome Association | USA.
United We Brunch Events:
Kathryn Lucero (mom to Ronan, living with PWS) hosted Magnolias and Mimosas in Colorado Springs, Colorado on May 16. Guests enjoyed mimosas, meaningful mission moments, and an elegant silent auction.
Sarah Kasaby (mom to Khaled, living with PWS) will be hosting her United We Brunch event on May 31, a beautiful end to PWS Awareness Month. Hummus & Watermelon, in Omaha, Nebraska, will bring guests together to experience connection, community, and purpose in a warm, engaging atmosphere that encourages generosity while raising both awareness and critical funds for PWSA | USA. Learn more and donate at: Hummus & Watermelon: United We Brunch for PWS – Campaign
Social Media:
We posted daily PWS Facts on our social media platforms, asked you to share, and you all stepped up! Sharing our daily facts, along with utilizing the PWS Awareness Toolkit, helped to spread PWS awareness into homes and communities all over the globe. Sometimes awareness is just one click away.
D.C. Fly-In:
On May 6, 174 attendees, including nearly 50 individuals living with Prader-Willi syndrome, attended 151 Congressional meetings (a new record). There were 32 states represented and meetings spanned 71 Senate offices and 80 House offices, with advocates connecting with 80 Democratic, 69 Republican, and 2 Independent offices.
Learn more about the event at Voices That Move Policy: Recapping PWSA | USA’s 2026 D.C. Fly-In – Prader-Willi Syndrome Association | USA
Listen to what attendees had to say about the event by listening to our PWS United podcast episode: Ep 94 Advocacy is Everything: 2026 DC Fly-In Recap | PWS United
Rare Aware Art Share:
Several individuals with PWS submitted artwork for our 2026 Rare Aware Art Share theme on Advocacy and Awareness, a creative and insightful way to dive deeper into the experience of living with PWS. You can enjoy their art and learn more about each artist by visiting our gallery at Rare Aware Art Share Portfolio 2024 – Prader-Willi Syndrome Association | USA
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.