We are excited to share, on World Narcolepsy Day, that PWSA | USA has been selected as one of Harmony Biosciences' 2021 Patients at the Heart recipients to educate the public on sleep affects in PWS.
Save the Orphan Drug Tax Credit!
The orphan drug tax credit is crucial to assist and encourage pharmaceutical companies to develop therapies for rare diseases. Please help us spread the word to lawmakers by clicking on the button below. History An Orphan Drug is a specific type of pharmaceutical that is created in order to treat a specific rare disease. The orphan...
Community Conversation Recap: For Families to Discuss the Impacts of Dr. van Bosse leaving Shriner’s Hospitals
On Tuesday evening, PWSA | USA hosted a Community Conversation bringing together members of the PWS community to informally share concerns, ideas, and updates on Dr. van Bosse’s recent departure from Shriners Hospitals. PWSA | USA CEO Paige Rivard has spoken directly with Dr. van Bosse who assured her that he remains committed to the...
PWSA | USA Family and Friends: We Need Your Help!
Attention PWSA | USA family and friends! We are working on a special project for our PWS community and are in need of pictures of you and your loved ones. We are creating a PWSA 2022 Calendar, which will be available in the next couple of months, and will include photo collages on each page....
Direct Support Professional Recognition Week
Direct Support Professional (DSP) is an umbrella term that includes many different titles and functions; for example: direct care, direct support worker/specialist/assistant/counselor, habilitation specialist, residential counselor, activities of daily living specialist, relief staff, apartment worker, developmental disabilities specialist, job coach, employment specialist, community bridge-builder, paid friend/neighbor, family care provider, family support services aide, community companion,...
FDA Advisory Committee to Review LEVO’s Carbetocin as a Treatment for PWS
We are excited to share that Levo’s New Drug Application (NDA) for carbetocin as a treatment for PWS will be discussed at a public meeting of the Psychopharmacologic Drugs Advisory Committee to be held November 4, 2021. This is a major step forward on this drug's path through the approval process. The Food and Drug...
Community Conversation Opportunity: For Families to Discuss the Impacts of Dr. van Bosse leaving Shriner’s Hospitals
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Soleno Therapeutics Announces Positive Data Showing Continued Significant Improvements in Symptoms of PWS following One Year Treatment with DCCR
(Soleno Therapeutics Press Release) Statistically significant reduction in hyperphagia and all other PWS behavioral parameters in Study C602 Statistically significant improvements compared to natural history of PWS from the PATH for PWS Study On track for data submission to the FDA in Q3 2021 REDWOOD CITY, Calif., Sept. 08, 2021 (GLOBE NEWSWIRE) -- Soleno Therapeutics,...
NEW Customizable PWS Health Identification Card!
To help our communities better understand Prader-Willi syndrome, how it affects those diagnosed, and what symptoms require immediate medical attention, PWSA | USA has created a customizable PWS Health Identification Card. This Health ID card can be printed and shared with anyone in your community, e.g. school officials, medical providers, family members, etc. Download the...
Creating Your Child’s Special Education File
Creating a master file that contains the enormous amount of paperwork your child with special education needs will not only keep you organized and aid you in preparing for all interactions with the school district but will give you a clearer understanding of your child’s special education needs and progress. Schools often keep records in...
Understanding Gastric Motility and Gastroparesis in PWS
Compiled and Reviewed by Barb Dorn, RN, BSN, Margaret Burns, RD, Prader-Willi Homes, and Dr. Ann Scheimann, MD What is Gastric Motility and Gastroparesis? GASTRIC MOTILITY is the rate at which the stomach empties. GASTROPARESIS is slow emptying of the stomach. This condition occurs when there is a delay or slowing in the contraction of...
A Message from PWSA | USA’s CEO Paige Rivard Regarding Dr. van Bosse
A message from PWSA | USA’s CEO Paige Rivard: As many of you have heard, Dr. Harold van Bosse is no longer with Shriners Hospitals for Children in Philadelphia. I was in contact with Dr. van Bosse who said he is in the process of moving his practice and is still very committed to the...
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.