FDA Accepts Application for New Drug DCCR, Moves to Priority Review
Exciting news for the Prader-Willi syndrome (PWS) community! Soleno Therapeutics has announced that the FDA has accepted their new drug application (NDA) for DCCR, a drug designed to treat hyperphagia in individuals with PWS aged 4 and older. This acceptance is a major first step, and the FDA has granted Priority Review, recognizing the potential...
Survey Results on the Aging Adult with PWS
Contributed by Barb Dorn, RN, BSN As I began my research looking at specific health issues in the aging adult with PWS, I soon learned that there was not much information on this topic. I did find a few articles that documented clinical evidence for early signs of aging. As far as dementia, I found...
Aging Research in Prader-Willi Syndrome
Compiled by Barb Dorn, RN, BSN People with PWS are growing old. Many of this may be the result of our increased knowledge in supporting and caring for the person with PWS. We have learned to replenish hormone deficiencies and manage their diet and food security. We have identified critical health issues and know that...
Soleno Therapeutics Submits New Drug Application to FDA for PWS Treatment
On June 28, 2024, Soleno Therapeutics announced the company officially submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for DCCR (diazoxide choline) extended-release tablets. This new treatment targets Prader-Willi syndrome (PWS) in individuals aged 4 and older with hyperphagia. CEO Anish Bhatnagar, M.D., says, “Submission of the DCCR NDA to...
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.