Provider Training
Supporting the Community Through Training
PWSA | USA supports the PWS community in a multitude of ways. This includes providing training to residential home and school staff. These trainings are an essential component of educating schools, homes, and providers to help our loved ones live safer, healthier lives. Kim Tula is our Alterman Family Support Counselor. She has recently traveled to a number of places to provide these trainings. We asked her to share details about her work in the community.
Types of Training
We offer specialized Prader-Willi syndrome (PWS) training for schools and residential providers, covering learning impacts, food security, behavior support, genetics, medical overview, and more. Attendees include school staff and various professionals. Our recent hospital training highlighted PWS-specific group home considerations.
Benefits of Training
Quality Care
Personalized support for PWS ensures food security and recognizes individual strengths.
An Informed Community
Targeted training raises awareness, promoting understanding of PWS complexities and diversity.
Supported Individuals
We prioritize individual strengths, providing tailored care for those with PWS.
Testimonials
“Your training was incredibly impactful for our staff and those who joined us. People have been writing to let me know how much they enjoyed it. It was really powerful for us. Thank you. It far exceeded our expectations-you were stellar to say the least. Great job and thank you.”
“Your training was incredibly impactful for our staff and those who joined us. People have been writing to let me know how much they enjoyed it. It was really powerful for us. Thank you. It far exceeded our expectations-you were stellar to say the least. Great job and thank you.”
Find a Provider Near You
Healthcare Directory
Explore providers that work with PWS families.
Read More
Residential Directory
Find a residential care provider near you.
Read More
PWS Clinics
Find clinics that support PWS research and care.
Read More
Interested in Training?
We’ll be happy to connect with you!
Please visit our interest page, fill out the form, and a member of our team will be in touch soon.
Visit our Blog
The (Sometimes Messy) Details of Life in a Clinical Trial
contributed by Anne Fricke, mom to Freya (13, living with Prader-Willi Syndrome) Freya’s third and fourth appointments for the Harmony TEMPO PWS trial to study whether pitolisant is an effective treatment for excessive daytime sleepiness (ESD) in individuals with PWS, were simply routine and a lot like the second appointment. Lab work, caregiver questionnaires, counting […]
Letter to Community on FDA’s Extension of DCCR Review
Dear PWS Families, We understand that hearing about the FDA’s extension of the review period for DCCR (diazoxide choline controlled release) may bring a mix of emotions, from hope to concern. Please know that this is a normal and expected part of the FDA’s thorough process, especially for a rare disease medication that has been […]
FDA Extends Review Period for DCCR: What It Means for the PWS Community
On Tuesday, November 26, 2024, Soleno Therapeutics shared an important development regarding the New Drug Application (NDA) for DCCR (diazoxide choline) extended-release tablets—a potential treatment for individuals with Prader-Willi syndrome (PWS) aged four and older who experience hyperphagia. The U.S. Food and Drug Administration (FDA) has extended the review period for this NDA, pushing 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.