Attention everyone in the Prader-Willi syndrome (PWS) community and beyond! We need your support NOW!
We are rallying behind a critical petition urging the FDA to take action on DCCR (diazoxide choline) for individuals living with PWS. Soleno Therapeutics’ investigational drug has shown remarkable promise in improving hyperphagia, reducing fat mass, and addressing challenging PWS-associated behaviors in clinical trials.
Why is this so urgent? Because PWS patients, families, and clinicians are facing a staggering lack of treatment options. Without FDA-approved therapies, individuals with PWS struggle with everyday tasks and face life-threatening risks. But DCCR could change that.
The data speaks volumes: DCCR has demonstrated significant improvements in hyperphagia and other PWS-related symptoms. Patients and caregivers have reported life-changing experiences, from regained control over eating habits to newfound independence in daily activities.
Now is the time to make our voices heard! We urge the FDA to prioritize the review of DCCR’s New Drug Application, recognizing the urgent need within the PWS community. Every signature counts in pushing this petition forward.
Join us in advocating for access to DCCR, a potential game-changer for those living with PWS. Sign the petition and spread the word to make a difference today!
Learn more and sign the petition by clicking the button below. We also encourage you to watch the recording of our April 25th PWS Advocacy webinar, which can be found by scrolling below.
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.