Date: Wednesday, April 16, 2025
Time: 9:15 AM PT | 12:15 PM ET
Location: Virtual via ZOOM
The Prader-Willi syndrome (PWS) community has reached a historic milestone – VYKAT XR (formerly known as DCCR in clinical trials) is now FDA-approved as the first-ever treatment for hyperphagia in PWS. To help families, caregivers, and healthcare providers understand what this means, Soleno Therapeutics and Medlive, in partnership with PWSA | USA and FPWR, are hosting a free, live webinar featuring expert speakers, real-life caregiver experiences, and important information about VYKAT XR.
What You’ll Learn
– How to recognize hyperphagia in people living with PWS
– How VYKAT XR works to manage hyperphagia
– A caregiver’s personal experience with VYKAT XR
– How to get started with VYKAT XR
Featured Speakers
– Kathryn Obrynba, MD – Nationwide Children’s Hospital
– Deahl Wilson – Caring for a loved one with PWS
– Stacy Ward – CEO, Prader-Willi Syndrome Association | USA
– Susan Hedstrom – Executive Director, Foundation for Prader-Willi Research
– Brennen Fields – Senior Director, Patient Access Solutions, Soleno Therapeutics
VYKAT XR’s FDA approval on March 26, 2025, marks a significant step forward in addressing one of the most challenging symptoms of PWS. This webinar is your opportunity to gain valuable insights, ask questions, and hear directly from experts and caregivers about what this treatment means for individuals with PWS and their families.
Register Today!
Don’t miss out – sign up now to secure your spot. If you are unable to attend the live session, a recording will be available.
You can also download a flyer at the button below and share it with your community to help spread the word.
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.