The month of May is an important time for our rare disease community because it’s recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and celebration of our loved ones is important 365 days a year, the 31 days in May offer an opportunity to really show off our PWS pride. Below, we share several different ways YOU can make an impact!
Get Involved in Our NEW PWS Awareness Month Initiative: United in Action
United in Action is a nationwide awareness and fundraising initiative built on a simple idea: Change starts with the people already in your life. By engaging friends, family, co-workers, and neighbors, you help expand understanding of PWS and strengthen the resources families rely on every day — one state, one family, one moment at a time.
Extend PWS awareness across your community by creating a personal fundraising page. It’s simple and takes just a few minutes.
1. Create your page by clicking the button below, select “Take Action! Build a Page Here,” and personalize it with your story. Your message doesn’t need to be long. Honest and personal is enough.
2. Share your page on social media with a short message about why this work matters to you.
3. Invite others to visit your page, make a gift if they’re able, and share it with their own networks.
Every share expands awareness. Every gift helps ensure PWS families have support when it matters most. Thank you for showing up and taking action!
Utilize PWSA | USA's PWS Awareness Month Graphics Toolkit
PWSA | USA has created several graphics designed to help you raise awareness on social media and in your community. From profile photos to flyers and a printable yard sign, this toolkit equips you with everything you need to make a difference. Let’s unite to educate others about PWS and show our support for those living with this rare genetic disorder. Together, we can make a meaningful impact and foster greater understanding and acceptance. Visit PWSA | USA’s PWS Awareness Month Hub by clicking the button below to access the toolkit and start spreading awareness! If you have any issues downloading or saving these graphics, reach out to communications@pwsausa.org.
Looking Ahead: Friday, May 15, 2026, is National PWS Awareness Day
In 2023, U.S. Congressman Paul D. Tonko (D-NY) and Congresswoman Maria Elvira Salazar (R-FL) filed a joint resolution declaring May 15 PWS Awareness Day in the United States of America.
Thank you to our advocates, especially those who shared our PWS Awareness Day ask on Capitol Hill at the September 2022 D.C. Fly-In, for working hard to make this milestone happen. We are hopeful this additional spotlight on our rare disease community will help further our cause and open new doors for the advancement of treatments.
Share Your Spotlight on PWS Story
Spotlight on PWS strives to share the everyday moments of our loved ones with PWS, whether it be an exciting success they had or a challenging moment they struggled to get through. We want to get to know more about individuals with PWS, celebrate with them, share in the frustrations, and provide support when and where we can.
Click the button below to share your Spotlight on PWS.
Wear Your PWS Pride!
To celebrate PWS Awareness Month, PWSA | USA has added new merchandise to our online store! Show your PWS pride during May, and all year long, with our Hyperphagia Sucks, PWS Advocate, Hope defined, PWS is RARE but HOPE is NOT, and Ask Me… About PWS items, including shirts, sweatshirts, water bottles, coffee mugs, hats, onesies, and so much more. Get yours TODAY by clicking the button below.
Download and Share PWSA | USA's PWS Awareness Month Facts Toolkit
You can help spread awareness and support by downloading our PWS Facts Toolkit at the button below. Equip yourself with vital information to educate others about this complex condition. Together, let’s raise awareness, promote understanding, and advocate for the PWS community. Download the toolkit now and make a difference throughout May!
Get Involved with PWSA | USA's 3rd D.C. Fly-In from Anywhere in the U.S.
For the third time, PWSA | USA is bringing the PWS community to Washington, D.C., putting real faces and real stories in front of the decision-makers who can create real change.
The 2026 D.C. Fly-In, held May 4-6 at the Yours Truly DC Hotel, is our largest yet. Nearly 200 parents, caregivers, individuals with PWS, family members, and industry partners will gather to advocate for change on Capitol Hill during PWS Awareness Month.
This event has grown so much since its launch, from 51 attendees and 76 congressional meetings in 2022, to 139 attendees and 131 meetings in 2024, to nearly 200 attendees and 150+ meetings anticipated in 2026.
On May 5, attendees will participate in a Policy Dive, a preparation session with PWSA | USA staff and expert speakers covering our three legislative asks. On May 6, Hill Day, attendees will bring the asks directly to their members of Congress (click on each ask to learn more):
Supporting Funding and Report Language in FY2027 for the FDA Rare Disease Innovation Hub
The Genomic Answers for Children Health Act (H.R. 7118)
The Keeping All Students Safe Act (KASSA)
You don’t have to be in D.C. to be part of Fly-In week. Join us via Facebook Live on Tuesday, May 5 as we stream our Policy Dive sessions, the same briefings our attendees will use to advocate on Capitol Hill the following day. Tune in to hear directly from expert speakers on each of our three legislative asks, and then contact your own senators and representatives to urge their support.
Policy Dive Livestream Schedule (all times ET):
- 1:15 – 2:00 PM – FDA Rare Disease Innovation Hub | Speaker: Amy Comstock Rick, J.D., FDA’s Rare Disease Innovation Hub & Center for Drug Evaluation and Research (CDER)
- 2:00 – 2:45 PM – Genomic Answers for Children Health Act | Speakers: Victoria Gemme, Leavitt Partners; Kimberly Lattimore, MPH, Nemours Children’s Health
- 2:45 – 3:30 PM – KASSA / Federal Education Landscape | Speakers: Robyn Linscott, The Arc of the United States; Destiny Pacha, Ed.D., EmpowerED Solutions
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.