We at PWSA | USA are grateful to be a part of this connected, passionate community and for the opportunity to provide support to families and individuals living with PWS. With your help, along with our hard-working staff and diligent volunteers, we have been able to spread our support to families around the country and beyond. In 2023, PWSA | USA was able to:
- Respond to 3,447 Family Support inquiries
- Provide training and IEP support at 94 schools
- Host 350 attendees at the FDA Externally-Led Patient-Focused Drug Development meeting
- Recruit 60 advocates to speak with elected officials in over 150 meetings for the PWS community
- Procure a Congressional Resolution declaring May 15th as PWS Awareness Day
- Host nearly 1,000 attendees in Orlando for our largest National Convention in 50 years
- Support a country-wide State Qualifier Campaign to help get PWS recognized at the state level
- Launch the Building Our Social Skills (BOSS) curriculum for teens and adults living with PWS
- Help expand the knowledgebase of Health Care Providers through ECHO 4 PWS. We are proud to be the first PWS organization to implement Project ECHO® in the U.S.
If you are inspired to help us continue this trend of progress and hope, our Angel Drive is open for donations until December 31, 2023.
To ensure we continue to meet your needs effectively, we invite and encourage you to participate in our brief community feedback survey. By gathering your insights, we can enhance our efforts to connect, inform, and engage with each of you in the most meaningful ways. Your participation in this survey will empower us to create a more informed, responsive, and supportive community for individuals with Prader-Willi syndrome and their families.
As we say goodbye to 2023 and look with renewed hope towards what exciting changes 2024 will bring, we want to wish you all a wonderful holiday season and remind you to continue to dream big for our loved ones with PWS. Together, we are making life better.
May you enjoy the rest and rejuvenation of these winter nights and face the new year refreshed and inspired.
Warmly,
Stacy Ward, MS
PWSA | USA CEO
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.