World Narcolepsy Day is recognized each year on September 22nd. Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. It affects about one in 2,000 people. Continued research suggests that children and adults with PWS experience sleep disorders including chronic insomnia and narcolepsy with cataplexy to a greater...
Contributed by PWSA | USA Alterman Family Support Counselor, Kim Tula, MS, CSW Camelot Society is an adult residential provider in the State of Washington that serves individuals diagnosed with Prader-Willi Syndrome (PWS). They currently operate one Group Training Home (GTH) and eight Supported Living (SL) homes. Group training homes are community-based, residential facilities that...
Contributed by Denise Servais, M. Ed, CCC-SLP One way to make a lasting impact and to honor a loved one with Prader-Willi syndrome is by remembering Prader-Willi Syndrome Association | USA in your will or estate plan. Creating a gift in your will or estate, at any level, is a special way to show your...
Information shared with PWSA | USA on behalf of the Evergreen Meadow Adult Foster Care Home: Evergreen Meadow Adult Foster Care Home in Ada, Michigan is anticipating a rare opening in the very near future. We provide a family setting as we live on-site, but are also a State Licensed Family AFC home and hold a...
National Direct Support Professionals Week is September 11 - 17, 2022. This is a week to recognize and show appreciation for the work of providers who are supporting individuals with developmental and intellectual disabilities to maximize their independence. Direct Support Professional (DSP) is an umbrella term that includes many different titles and functions, including direct...
PWSA | USA is honored to be recognized as a charity beneficiary of The Giving Pump! For those in our community who live in the Yonkers area of New York, we encourage you to fill up your tank at the Shell Gas station located at 1 Enterprise Blvd., Yonkers, NY. Through October 31st, a portion...
Contributed by PWSA | USA Alterman Family Support Counselor, Kim Tula, MS, CSW The Arc of Alachua County, located in Gainesville Florida, currently operates ten group homes that specialize in serving adults with PWS. These group homes are licensed by The Agency for Persons with Disabilities (APD). ADP oversees and funds Home and Community Based...
To learn more about sleep issues in individuals living with PWS, PWSA | USA created a six-month program entitled Sleep Issues in Prader-Willi Syndrome: A Deep Dive for Parents & Practitioners, which included monthly focus group discussions led by a trained facilitator. The program will conclude with a full day PWSA | USA Virtual Sleep...
In an effort to help our PWS community better understand its SCOUT-015 trial, Radius Health has released several resources about the process of the study, trial sites, and about their drug RAD011 a synthetic cannabidiol oral solution, which is being studied as a possible treatment for hyperphagia and related behaviors in Prader-Willi syndrome. Click on...
The Reconciliation for Prescription Drug Pricing Legislation could make it even more expensive for pharmaceutical companies to develop therapies for rare diseases! The reconciliation for prescription drug pricing legislation is putting cures at risk for patients and their families. The measure was proposed in an effort to lower out of pocket costs for millions of...
On July 19, 2022, the U.S. Department of Education Office for Civil Rights (OCR) and Office of Special Education and Rehabilitative Services (OSERS) released new guidances designed to clarify the use of disciplinary practices in schools. The guidances clarify that students with disabilities have legal rights and protections in the Individuals with Disabilities Education Act...
Has your 3–7-year-old child been diagnosed with Prader-Willi syndrome? Do they have trouble sleeping? You may be eligible to participate in a thesis study! If your child has a confirmed diagnosis of Prader-Willi syndrome, is awake at least once per night three nights of the week and has trouble going to bed at least three...
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.