PWSA | USA has submitted our “Congressional Letter of Support” to the FDA with 27 signatures from U.S. Congress members! This letter pushes for urgent development and approval of treatments for Prader-Willi syndrome. A big thank you to our advocates who shared this ask during the 2024 D.C. Fly-In and to the team leads who worked diligently to follow up with their members of Congress. Your dedication is making a difference.
Thank you to the members of Congress who showed their support for our community by signing the letter! Together, we’re bringing hope and a better quality of life to those affected by PWS.
Congress Members Who Signed the Congressional Letter of Support:
A. Drew Ferguson IV
R – GA
Abigail Davis Spanberger
D – VA
Alex X. Mooney
R – WV
Paul Tonko
D – NY
Angie Craig
D – MN
Brad Finstad
R – MN
Bradley Scott Schneider
D – IL
Chris Pappas
D – NH
Dan Newhouse
R – WA
Daniel Webster
R – FL
Don Bacon
R – NE
Gus M. Bilirakis
R – FL
Juan Ciscomani
R – AZ
Maria Elira Salazar
R – FL
Mark Pocan
D – WI
Max L. Miller
R – OH
Melanie Stansbury
D – NM
Mike Garcia
R – CA
Nathaniel Moran
R – TX
Raj Krishnamoorthi
D – IL
Ro Khanna
D – CA
Salud Carbajal
D – CA
Sharice Davids
D – KS
Shri Thanedar
D – MI
Vern Buchanan
R – FL
W. Gregory Steube
R – FL
William R. Keating
D – MA
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.