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

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