Operation Holiday Cheer Returns to Support PWS Families in 2025
Thanks to the incredible generosity of an anonymous donor, PWSA | USA is thrilled to bring back Operation Holiday Cheer for 2025! This heartwarming initiative helps spread joy to families in need by easing the financial burden of the holiday season. Through this program, a select number of families affected by Prader-Willi syndrome will receive gift...
Soleno Therapeutics to Invest $5 Million in Research Toward a Potential Cure for Prader-Willi Syndrome
PWSA | USA is excited to celebrate a powerful new commitment from Soleno Therapeutics, a company already making history in the Prader-Willi syndrome (PWS) community. Following the FDA approval of VYKAT™ XR (diazoxide choline extended-release tablets), the first-ever treatment for hyperphagia in PWS, Soleno has announced plans to invest up to $5 million in grant...
A Message from Soleno Therapeutics to the PWS Community
Soleno Therapeutics has released a statement to the PWS community regarding VYKAT™ XR (diazoxide choline) extended-release tablets, the first and only FDA-approved treatment for patients 4 years and older to address hyperphagia in Prader-Willi syndrome. In their message, Soleno reaffirms their commitment to safety, transparency, and partnership with the PWS community as VYKAT XR becomes...
Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics
Hyperphagia, the relentless hunger that those living with Prader-Willi syndrome (PWS) experience, remains one of the most challenging and life-altering symptoms for individuals and families. But a promising investigational drug called ARD-101 is offering hope. In our April 29th episode of PWS United, Aardvark Therapeutics’ Dr. Tien Lee, M.D., CEO and Founder, and Dr. Manasi...
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.
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 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.
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 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.