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Give the Gift of Hope: 2023 Angel Drive
November 1, 2023 - December 31, 2023
As children, we always remember our favorite gifts bestowed at holiday times: a shiny red bike, a beloved doll, a new baseball glove. These gifts and the loved ones who gave them to us are forever etched in our memories now and always.
As the holiday season begins and the new year approaches, PWSA | USA is grateful for your continued gifts of support and engagement. Together, we work to tackle issues critical to our PWS community:
- PWSA | USA is helping to 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.
- We’re partnering with pharmaceutical companies and the FDA to help advance PWS clinical trials, specifically for sleep-related issues and hyperphagia (insatiable hunger) treatments.
- In June 2023, PWSA | USA hosted the largest attended National Convention to date, with nearly 1,000 guests in attendance. In addition, 350 people attended the historic FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD).
- 60 of our volunteer advocates have participated in more than 150 meetings with elected officials to raise awareness and enact change. We are proud to say these efforts led a Congressional Resolution declaring May 15th as National PWS Awareness Day.
- Our Family Support team responded to 3,447 requests for support.
- We launched the Building Our Social Skills (BOSS) curriculum for teens and adults living with PWS.
Help be a positive force in our work and propel this momentum forward by Giving the Gift of HOPE to ensure we can continue TAKING ACTION in the new year! Whether it’s working with volunteer advocates to raise our voices with legislators in Washington, D.C. about issues that matter most or helping you navigate the challenges associated with PWS, your year-end, tax-deductible gift ensures that PWSA | USA can continue to provide HOPE to families 24/7/365!
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.