With the start of a new year just around the corner, we want to take this opportunity to share a heartfelt thank you to everyone in our community and to those who have supported PWSA | USA. We have several accomplishments to celebrate from this past year, including:
- Hosting our first Volunteer Summit and giving 30 volunteers the opportunity to brainstorm, connect, and provide PWSA | USA with ideas for the future
- Bringing more than 50 advocates to Capitol Hill for PWSA | USA’s first-ever D.C. Fly-In
- Launching our Peer-to-Peer fundraising platform - PWS Hope United
- Welcoming several experts on sleep issues to offer a free Virtual Sleep Summit
- Offering support to families more than 1,500 times in all 50 states and multiple countries
- Generating new educational resources, including social stories, financial literacy, a health care webinar series, and so much more!
We are grateful to have a community that is full of hope, passion, and commitment. We look forward to serving our families through our advocacy, family support, and research initiatives in 2023, and gathering together again in-person for PWSA | USA's 37th National Convention. We hope to see you there!
May this holiday season and the coming year bring joy, health, and happiness to you and your family.
Warm regards,
Paige Rivard, MBA | CEO
PWSA | USA Staff
PWSA | USA Board of Directors
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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.