Family & Medical Support
PWSA (USA) supports individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources. We educate medical providers, educators, and professional care givers about PWS and how to best support individuals with the syndrome.
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Research
PWSA (USA) seeks to support research projects with the potential for immediate and high impact for the PWS community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.
Public Policy Advocacy & Raising Awareness
Raising awareness and effective advocacy are critical to effecting positive change in and for the Prader-Willi syndrome community. PWSA (USA) is committed to empowering individuals with PWS and their families with resources and tools such as the Public Policy Action Center.
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Prader-Willi Syndrome Medical Alert Booklet
Latest Articles
Sunshine Means It’s Summertime!
Summer is the perfect opportunity to spend time with your family, have fun, and de-stress. Whether you are hiking near a remote waterfall, camping in your own backyard, riding bikes through the neighborhood, or running through the sprinkler, doing it as a family makes it more fun and helps create life-long memories. Individuals with...
Exercise: Healthy Fun for Everyone
You have heard exercise is good for physical health, but did you know research also shows exercise is beneficial to mental health and mood? According to the Mayo Clinic, physical activity stimulates endorphins in the brain that elevate mood and encourage relaxation. Exercise can fend off depression and anxiety in individuals with PWS and...
Happy Teacher Appreciation Week!
It is National Teacher Appreciation Week and there is no better time to show the teachers in your life how valuable they are your children’s academic success and overall development! I once considered becoming a teacher (Who doesn’t; love the idea of getting out of work by 3 PM every day and long summer...
Volunteer Appreciation Week: Thank YOU for being Part of our CommUNITY!
Volunteer Appreciation Week: Thank YOU for being Part of our CommUNITY! Over 45 years ago, PWSA (USA) was founded by volunteers. It remained a fully volunteer-run organization until 1980 when our first paid Executive Director was hired (the next paid staff wasn’t hired until 1984!). While the number of staff has grown to 14,...
2020 Giving Challenge
Take Part in the 2020 Giving Challenge! Noon to Noon, April 28-29...
National Direct Support Professional 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...
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.