Every two years, individuals living with Prader-Willi syndrome (PWS), their family members, and supporters do something remarkable. They pack their bags, book their flights, and travel to Washington, D.C. to make sure the voices of our rare community are heard where it matters most. This May, that tradition reached new heights.
PWSA | USA’s 3rd Biennial D.C. Fly-In took place May 4-6, 2026, and by every measure, it was our most powerful yet.
By the Numbers
The 2026 D.C. Fly-In set records across the board:
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174 attendees, including nearly 50 individuals living with Prader-Willi syndrome
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151 Congressional meetings (a new record)
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32 states represented
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Meetings spanned 71 Senate offices and 80 House offices, with advocates connecting with 80 Democratic, 69 Republican, and 2 Independent offices
Three Days of Learning, Connecting, and Advocating
May 4 kicked off with our Advocacy Ambassadors Training, sponsored by Soleno Therapeutics. This 5-hour meeting equipped both new and returning PWSA | USA advocates with the tools and confidence needed to make their voices heard on Capitol Hill and beyond.
May 5 opened with our Policy Dive sessions, where advocates had the opportunity to hear from an exceptional lineup of speakers who brought depth and context to our legislative priorities:
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Amy Comstock Rick, J.D., Associate Director for Rare Disease Strategy, Center for Drug Evaluation and Research (CDER), and Director of Strategic Coalitions, FDA's Rare Disease Innovation Hub
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Victoria Gemme, Director at Leavitt Partners
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Kimberly Lattimore, MPH, Federal Affairs Program Manager at Nemours Children's Health
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Robyn Linscott, Director of Education and Family Policy, The Arc of the United States
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Destiny Pacha, Ed.D., Author and President of EmpowerED Solutions
The day also welcomed two inspiring keynote speakers: Annie Kennedy, Chief Mission Officer of the EveryLife Foundation for Rare Diseases, who delivered the lunch keynote, and Mandy Benedix, Founder of Rooted Together, who closed the evening with the dinner keynote. The day wrapped up with a welcome dinner that gave advocates a chance to connect, recharge, and prepare for the big day ahead.
May 6, our “Hill Day,” was where it all came together. Advocates spread out across Capitol Hill for 151 Congressional meetings, bringing their stories, their asks, and their determination directly to elected officials and legislative staffers. The day concluded with a cocktail reception where elected officials and their teams were invited to learn more about PWS and our legislative priorities in a more informal setting.
2026 D.C. Fly-In Legislative Priorities
Going into every Hill meeting, our advocates focused on three critical legislative priorities:
Ask #1: FDA’s Rare Disease Innovation Hub – Supporting dedicated funding and report language in fiscal year 2027 for the Rare Disease Innovation Hub. Download the document here.
Ask #2: The Genomic Answers for Children’s Health Act (H.R. 7118) – Bipartisan legislation that improves the diagnosis and treatment of children on Medicaid. Download the document here.
Ask #3: Keeping All Students Safe Act (KASSA) – Legislation protecting students from the harm of seclusion and restraint. Download the document here.
Advocates encouraged their elected officials to co-sponsor or sign on to these bills, and at minimum, to review the detailed ask documents left behind with every office visited.
Fly-In Reflections
No one understands the heart behind the D.C. Fly-In quite like the people who pour themselves into making it happen. Two members of the PWSA | USA team, who each played an integral role in bringing this event to life, shared what the 2026 Fly-In meant to them.
“Earlier this month in Washington, D.C., I had the privilege of standing in a space that means so much to me. Not just as an advocate, not just as part of the PWSA | USA team, but most importantly, as Hunter’s mom. Together, 174 members of our community showed up, representing 32 states and including nearly 50 individuals living with Prader-Willi syndrome. We walked the halls of Congress with purpose, carrying with us the stories, challenges, and hopes of families across the country.
Over the course of the fly-in, we held 151 Congressional meetings. We met with Senate and House offices, bringing forward conversations that went far beyond policy. These were conversations about real lives, about safety, access, dignity, and the daily realities of loving and caring for someone with PWS.
But what I witnessed throughout those meetings is something that numbers can’t fully capture. I watched parents find the courage to share deeply personal moments of their lives. I watched individuals living with PWS speak with honesty, strength, and pride. I watched first-time advocates walk into meetings unsure, and walk out knowing they made an impact.
And I felt it too.
Because every time I tell our story, I’m not just speaking in a professional capacity. I’m speaking as Hunter’s mom. I’m speaking from a place of love, fear, hope, and determination. And I know I’m not alone in that.
Advocacy isn’t about policy for us. It’s about our loved ones living with PWS. It’s about making sure they are seen, protected, and given every opportunity to live full and meaningful lives. Every story shared carried that truth into the rooms where decisions are made.
This fly-in was not just about meetings. It was about connection, building relationships, creating understanding, and reminding those in positions of power that behind every issue is a family navigating something incredibly complex. What continues to move me most is this community’s willingness to show up. They show up for each other, for those who couldn’t be there, and for the future we are all fighting to build.
We left D.C. with momentum, with stronger voices, and with a deeper sense of unity. But more than anything, we left knowing that this work, this fight, is deeply personal for all of us.
And we’re not going anywhere.”
– Dorothea Lantz, PWSA | USA’s Director of Community Engagement and mom to Hunter (8, living with PWS)
“Reflecting on this year’s D.C. Fly-In is truly difficult to capture in words because it meant so much to me on both a personal and professional level.
This year was especially meaningful because I had the opportunity to bring my 15-year-old son, Joseph, who is living with PWS, and my 17-year-old daughter, Ella. For the first time, I experienced the D.C. Fly-In not only through the lens of my role as an event planner, but also as a mother.
Watching Ella immediately connect with the incredible kids and families in attendance was deeply moving. Seeing her step in so naturally, build relationships, and form such a special bond with Hunter, Dorothea’s son, was something I know will stay with her for years to come.
For Joseph, this experience was incredibly powerful. He had the chance to use his voice to share what it truly means to live with PWS. More than anything, Joseph wanted others to understand that he does not want sympathy, he wants to be seen for who he truly is: A young man who loves sports, values his friendships, and dreams of living an independent and fulfilling life. Watching him advocate for himself and others was one of the proudest moments I’ve had as his mom.
This trip also strengthened the bond between the three of us in ways I never expected. Ella was able to see me not only as her mom, but as someone deeply passionate about my work with PWSA | USA and the families we serve. I believe this experience gave her a greater understanding of why I travel so often and why this mission is so close to my heart.
Most importantly, I saw something truly special in Joseph, a renewed light in his eyes. Being surrounded by old and new friends, sharing his story, and knowing he could make a difference was transformative.
I am already looking forward to the next D.C. Fly-In and hope to see even more families join us each year. Together, our voices are stronger, and together, we can create meaningful change.”
– Angela Frazier, PWSA | USA’s Event Planner and mom to Joseph (15, living with PWS)
Thank You
To every single person who traveled to Washington, D.C. for the 2026 Fly-In, thank you. Whether you came alone, with your loved one living with PWS, or with your entire family, you gave your time, your energy, and your stories to a cause that is bigger than any one of us. You walked into the offices of your elected officials and you made Prader-Willi syndrome impossible to ignore. You represented not just your own families, but every family in the PWS community who couldn’t be there. The impact you are making on a national stage is real, it is lasting, and it is extraordinary.
You have made a difference. You are continuing to make a difference. And this community is stronger because of you.
The 2026 D.C. Fly-In would not have been possible without the generous support of our sponsors. A heartfelt thank you to Harmony Biosciences, Soleno Therapeutics, and Aardvark Therapeutics.
Your partnership allows us to bring this community together and amplify the PWS voice on Capitol Hill. We are deeply grateful.
Relive the Fly-In
Want to see the 2026 D.C. Fly-In in action? Browse our official photo gallery and experience the energy, the connections, and the advocacy for yourself. Click the button below to be directed to our Fly-In photo gallery website.
Interested in joining us for a future D.C. Fly-In or getting involved in advocacy for the PWS community? Visit PWSA | USA’s Advocacy page to learn more.
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.