News
RECENT NEWS
The FDA has approved VYKAT™ XR (diazoxide choline extended-release tablets) as the first-ever treatment for hyperphagia in individuals with Prader-Willi syndrome. This groundbreaking approval marks a major step forward for the PWS community, made possible by years of advocacy from families, researchers, and PWSA | USA.
Soleno Therapeutics, the company behind the treatment, will host a Caregiver Now Approved Webinar on April 16th to share more details.
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Have a story to share or media inquiry? Reach out directly to the right member of our team using the contacts below.
General Press Inquiries
– Stacy Ward – sward@pwsausa.org
Research & Advocacy
– Dorothea Lantz – dlantz@pwsausa.org
Marketing & Communications
– Carolyn Larsen – clarsen@pwsausa.org
– Anne Fricke – africke@pwsausa.org
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.