D.C. Fly-In 2024
Thank You to Everyone Who Made PWSA | USA’s 2024 D.C. Fly-In a MAJOR Success!
Between May 13th and 15th, the Prader-Willi Syndrome Association (PWSA) | USA held its second biennial D.C. Fly-In to celebrate PWS Awareness Day. This event was a resounding success, drawing 139 dedicated advocates from 31 states. Together, these advocates attended a remarkable total of 131 Congressional meetings, highlighting the widespread support and commitment to advancing our cause.
Congressional Meetings Overview
– Total Congressional Meetings: 131
– Member Level Meetings: 13
– Senate Meetings: 67
– House Meetings: 64
– Democratic Offices: 74
– Republican Offices: 55
– Independent Offices: 2
Our advocates engaged in meaningful discussions, ensuring the voices of those affected by Prader-Willi syndrome were heard loud and clear on Capitol Hill. We gathered congressional support for adding Prader-Willi syndrome to the Department of Defense Peer Reviewed Medical Research Program, gathered co-sponsors for the Promising Pathway Act, and obtained congressional support for PWS research and development with the FDA.
Policy Dive Panel Discussion
A key highlight of the fly-in was our in-depth policy dive, featuring a distinguished panel discussion. The panel included:
- Chris Jones: Senior Policy Advisor for Congressman Bilirakis of Florida
- Jacob Chebowski: Legislative Assistant for Senator Braun of Indiana
- Terry Wilcox: CEO and Co-founder of Patients Rising
The panelists provided valuable insights into healthcare policies affecting the rare disease community, with a particular focus on the Promising Pathway Act 2.0. Their expertise and perspectives helped our advocates understand the legislative landscape and the importance of continued advocacy for improved healthcare policies.
Impact and Takeaways
The fly-in was an inspirational and educational experience for all involved. Our advocates left with a renewed sense of purpose and a deeper understanding of the legislative process. Our efforts on the Promising Pathway Act 2.0 made a direct impact and helped Senator Braun file this legislation with revised language the week following our event! The connections made, the relationships we continue to foster, and the knowledge gained will undoubtedly strengthen our ongoing efforts to support individuals with Prader-Willi syndrome and their families.
We are immensely proud of the commitment and enthusiasm shown by our advocates and are grateful for the support of the Congressional members and their staff who took the time to meet with us. Together, we are making significant strides towards better, more inclusive healthcare policies for rare diseases and greater awareness for Prader-Willi syndrome.
Thank you to everyone who participated and contributed to the success of our 2nd PWSA | USA D.C. Fly-in. We look forward to continuing this vital work and building on the momentum we have created. If you are interested in joining our advocacy team, please email Advocacy@pwsausa.org.
Thank You, D.C. Fly-In Sponsors!
2024 D.C. Fly-In Mini Documentary
We were fortunate to have PWSA | USA’s 2024 D.C. Fly-In event captured in a unique and authentic way. Please enjoy this mini-documentary of our time on Capitol Hill, where nearly 150 parents, caregivers, siblings, family members, and individuals living with PWS came together to advocate for our community’s needs. We are sincerely grateful to those who stepped in front of the camera lens to share their story. Together, we are driving change and making a lasting impact for those affected by PWS. Thanks to Soleno Therapeutics for sponsoring the production of these videos. Produced by Believe Limited: The Patient People.
2024 D.C. Fly-In Hill Day Asks
2024 D.C. Fly-In: By the Numbers
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.