May 8, 2024 (Washington, D.C.) — Prepare for a powerful convergence in the heart of Washington, D.C., on May 15th as advocates for individuals living with Prader-Willi syndrome (PWS) gather for PWSA | USA’s important advocacy event, the D.C. Fly-In. This year marks the 2nd National PWS Awareness Day, a significant milestone achieved through the dedication of U.S. Congressman Paul D. Tonko (D-NY) and Congresswoman Maria Elvira Salazar (R-FL). They introduced a joint resolution officially declaring the day of recognition last year on May 15, 2023.
Organized by PWSA | USA, the 2nd D.C. Fly-In event has seen remarkable growth since its inception in September 2022, with attendance growing from 50 individuals to nearly 150. Among those participating are parents, caregivers, siblings, extended family members, and individuals living with Prader-Willi syndrome.
This two-day event kicks off May 14th with a rare disease policy dive, which will extend through May 15th when our advocates will begin the celebration of PWS Awareness Day on the floor of the U.S. House of Representatives. Throughout the day, advocates will engage in more than 100 meetings with elected officials and their staff to raise awareness for PWS and advocate for support on three critical initiatives.
These initiatives include the Promising Pathway Act 2.0, aimed at advancing research and treatments for rare diseases like PWS; the Peer Reviewed Medical Research Program (PRMRP), which provides funding for innovative medical research; and a congressional letter of support to the FDA, urging continued attention to PWS-related issues.
“This is an extremely important time for our rare disease community,” said PWSA | USA CEO Stacy Ward, MS, BCBA. “By coming together in Washington, D.C., we are amplifying our voices and advocating for policies and initiatives that can profoundly impact the lives of those affected by Prader-Willi syndrome.”
“I have been an advocate for my daughter since she was born 12 years ago – every time we walk into a doctor’s office, therapy appointment, or IEP meeting, when she starts a new sport or we meet a new family, every phone call with an insurance agent or pharmacy, and beyond. I have always been the only PWS parent in the room, with the exception of my husband. Now I get to travel to our nation’s capital and share our story in the halls of legislature alongside people who can relate. Attending this fly-in is an incredible opportunity to not only advocate for my daughter, but an entire community,” said Anne Fricke, mom to Freya (12), living with PWS.
For more information about PWS Awareness Month and how you can get involved, please visit PWSA | USA’s dedicated webpage: https://www.pwsausa.org/pwsawarenessmonth/
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.
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.
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.
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.
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.