Saniona Pausing All Clinical Trials for PWS Drug Tesomet Due to Funding Limitations
This morning, Saniona announced they will be voluntarily pausing all Phase 2b Clinical Trials for the drug Tesomet, which is being studied as a treatment for Prader-Willi syndrome (PWS). Saniona has explained that this pause is due to funding limitations and has nothing to do with the "safety or efficacy" of the drug itself. PWSA...
PWSA | USA’s 2021 Annual Report
Dear friends, On behalf of PWSA | USA's Board of Directors and Staff, we are sincerely grateful for YOU, our PWS community, for coming together in advocacy, family support, and research over the past year. We would not be able to offer the resources, care, and hope to our families and individuals living with PWS...
PWSA | USA’s Board of Directors Transition
Each year the Board of Directors says goodbye to the members whose term expires at the end of August, and welcomes all newly-elected or appointed members whose terms begin on September 1. PWSA |USA congratulates and welcomes incoming Board members who began their 2021-2024 term: Clint Hurdle John Lens Marguerite Rupnow (incumbent) Ann Scheimann, M.D....
FDA Advisory Committee to Review LEVO’s Carbetocin as a Treatment for PWS
We are excited to share that Levo’s New Drug Application (NDA) for carbetocin as a treatment for PWS will be discussed at a public meeting of the Psychopharmacologic Drugs Advisory Committee to be held November 4, 2021. This is a major step forward on this drug's path through the approval process. The Food and Drug...
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.