PWS Breaking News! FDA Approves First-Ever Treatment for Hyperphagia in PWS
We are thrilled to share with you this BREAKING NEWS for the PWS Community!ย The U.S. Food and Drug Administration (FDA) has officiallyย approved VYKATโข XR (diazoxide choline extended-release tablets, formerly referred to as DCCR) as the first-ever treatment for hyperphagia in Prader-Willi syndrome. This isย aย monumentalย victory for individuals with PWS, our families, and the entire rare disease...
Celebrating 50 Years of Hope: Ushering in PWSA | USAโs Anniversary Year
As the calendar turns to 2025, we at Prader-Willi Syndrome Association | USA (PWSA | USA) are filled with gratitude and anticipation. This year marks a monumental milestone: 50 years of supporting individuals with Prader-Willi syndrome (PWS) and their families through advocacy, education, research opportunities, and compassion. Our story began in 1975, when Gene and...
Letter to Community on FDA’s Extension of DCCR Review
Dear PWS Families, We understand that hearing about the FDAโs extension of the review period for DCCR (diazoxide choline controlled release) may bring a mix of emotions, from hope to concern. Please know that this is a normal and expected part of the FDAโs thorough process, especially for a rare disease medication that has been...
FDA Extends Review Period for DCCR: What It Means for the PWS Community
On Tuesday, November 26, 2024, Soleno Therapeutics shared an important development regarding the New Drug Application (NDA) for DCCR (diazoxide choline) extended-release tabletsโa potential treatment for individuals with Prader-Willi syndrome (PWS) aged four and older who experience hyperphagia. The U.S. Food and Drug Administration (FDA) has extended the review period for this NDA, pushing the...
Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย 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 Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs 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 Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.