PWS advocates returned from EveryLife Foundation for Rare Diseases’s Rare Disease Week on Capitol Hill energized and inspired for the work ahead, especially as we look toward PWSA | USA’s D.C. Fly-In this May.
Twenty-two PWS advocates, including four individuals living with Prader-Willi syndrome, gathered on Capitol Hill alongside 800+ other rare disease champions from across the country. Traveling from communities nationwide, they came together with one shared purpose: to ensure the PWS community’s voice is heard where decisions are made.
While they were on the ground advocating, we asked several of them to share their favorite moments from the week. Here’s what they had to say:
“My favorite part from the first day at Rare Disease Week was when we heard from the 2025 Rare Artist Award recipients. Each year, the EveryLife Foundation holds a contest and displays the award recipients’ artwork during Rare Disease Week, and it is phenomenal. We were even treated to a live performance by one of the winners, who is the twin of a person with a rare disease. It was incredibly powerful. During the event, the Rare Artists spoke about the power of art to communicate things words can’t. They’ve brought their artwork into congressional offices and shared it with lawmakers, saying, ‘I could tell you about my rare disease, but you can also look at this, and it will tell you everything you need to know.’ They talked about expanding access to art for everyone in the rare disease community as a meaningful form of expression, and about the powerful way art brings people together, which is really what this entire event is about: Bringing us together as rare disease patients and families and creating a unified, stronger front. Alone we are rare, but together we are stronger."
"This is my first time experiencing Rare Disease Week. It’s really great to see a critical mass of people living with rare diseases, caregivers, and families coming together to prepare to talk on the hill with their representatives. We’ve been going over our legislative asks, getting prepared, and are ready to take on our meetings."
“On Wednesday, we started the day by recognizing that in the recent Appropriations Bill the president signed a couple of weeks ago, many of the legislative policies we’ve been advocating for were passed. It was very moving, and I even took a video (click the button below to watch). I’m not usually a crier, but I got very emotional about it. It was really a powerful way to start the day. There were about 800 advocates in attendance, and the PWS community was well represented, with about 17 of us there, along with members of our industry community supporting us and the work that’s happening.”
“This is my fourth time attending Rare Disease Week and probably, I don’t even know, close to 20 times advocating on Capitol Hill now. I love coming here and talking about Prader-Willi. My daughter is seven and a half and living with PWS. I love explaining why the rare disease community truly needs attention and discussing FDA-related topics, including the importance of holding them accountable, the need for shorter trial timelines, and quicker review processes, because our population doesn’t have a lot of time. It’s really important to come out here and say, ‘Hey, we matter.’ There are so many different rare diseases represented, and we are truly a united front on Capitol Hill. It’s a great event to be part of.”
“I’m really looking forward to seeing Sheri speak. That’s the main reason I came, to see my friend and support her because I know she’s telling some beautiful stories about how we want our children and our loved ones with Prader-Willi syndrome to age and live beautiful, full lives.”
“Attending Hill meetings alongside representatives and parents impacted by other rare diseases always leaves me feeling inspired and reminded that we are part of something far bigger than just the PWS community. I had the opportunity to visit and speak with Congressman Paul Tonko's (NY) office. Rep. Tonko has consistently been a true friend and steadfast champion of the PWS community and the rare disease community as a whole. We are deeply grateful for his continued commitment to advancing legislation that supports individuals and families affected by rare diseases.”
Thank you to all of our advocates who made the trip to D.C.! We are grateful for your time, energy, and dedication to advocating for the PWS community.
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.