U.S. Senate Committee Hearing Live Broadcast Link Now Available
This Thursday, PWSA | USA advocates will participate in a groundbreaking opportunity for the PWS community! On October 26, 2023, our advocates will be present for a press conference on Capitol Hill, hosted by Senator Mike Braun (R-IN), Senator Kirsten Gillibrand (D-NY), Representative Mike Gallagher (R-WI), and Representative Mike Quigley (D-IL). The press event will give details about the Promising Pathway Act (PPA) and how rare diseases, including PWS, would benefit from its passage.
The Senate Committee on Aging will then hold a hearing titled Unlocking Hope: Access to Therapies for People with Rare, Progressive, and Serious Diseases. Our dedicated advocates will participate in the congressional hearing and raise awareness for PWS.
Soleno Therapeutics has also announced the company's CEO Anish Bhatnagar, M.D., will provide a witness statement during the Senate committee hearing. According to their release, "Both events (the press conference and hearing) will highlight the barriers to treatment faced by Americans with rare and progressive diseases. Anish Bhatnagar, M.D., Chief Executive Officer of Soleno Therapeutics will act as a witness in the Senate hearing and share the regulatory challenges faced by the Prader-Willi Syndrome community, and the broader rare disease community."
Click the button below to access the link to watch the Senate committee hearing LIVE on Thursday at 10:00AM EST! Ahead of the congressional hearing, you are also encouraged to share your story with Congress to amplify our community's voice. If you're interested in participating, click HERE to learn more.
ABOUT THE PROMISING PATHWAY ACT
Introduced by Senator Mike Braun (R-IN), Senator Kirsten Gillibrand (D-NY), Senator Lisa Murkowski (R-AK), Senator Kevin Cramer (R-ND) and Senator Roger Wicker (R-MS), this bill would expedite beneficial outcomes for patients by requiring the FDA to establish a rolling, real-time, priority review pathway for drugs intended to treat, prevent, or diagnose serious or life-threatening diseases or conditions. Learn more by clicking HERE.
Share this!
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.