As we approach the end of 2024, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA), and it’s all thanks to your engagement and generosity.
Sharing and Celebrating Our 2024 Achievements
- Our 2024 D.C. Fly-In saw 150 advocates participate in over 130 congressional meetings, resulting in a letter of support for PWS signed by 27 elected officials.
- The voice of individuals with PWS was amplified by the community’s historic Voice of the Patient Report and PWS Advocacy Coalition Petition to the FDA, advocating for Soleno Therapeutics’ DCCR new drug application and future treatments, AND the re-launch of our Adults-with-PWS Advisory Board.
- We helped over 50 teens and adults living with PWS develop essential communication skills to better navigate relationships through our BOSS Program.
- We launched the PWS United Podcast to share resources and stories, fostering community connection. Our first-ever Residential Providers Conference brought together over 100 providers to improve care for individuals with PWS.
Looking Ahead to 2025: Celebrating 50 Years of Impact
As we approach our 50th anniversary in 2025, we reflect on our progress and renew our commitment to the PWS community. To advance this important work, we need your support.
Join Our 2024 Angel Drive
Make a gift to the 2024 Angel Drive before December 15th, and you’ll be entered to win one of four fantastic prizes: an Apple Smart Watch, a $300 Amazon Gift Card, Custom Nike PWS Sneakers, or a PWSA Swag Bag!
By giving your gift of HOPE, you’ll help us remain a lifeline, ensuring families can access vital resources, from critical support services to advancing research, advocacy, and awareness. Your tax-deductible gift guarantees that PWSA | USA can continue providing hope, 24/7/365. Thank you for being part of this journey and for your unwavering commitment to the PWS community.
WE LOVE
They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients, and friends living with the obstacles that come with this rare and complex diagnosis of PWS.
WE HOPE
They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients, and friends living with the obstacles that come with this rare and complex diagnosis of PWS.
WE DO
They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients, and friends living with the obstacles that come with this rare and complex diagnosis of PWS.
Supported nearly 4,000 families with comprehensive PWS guidance and assistance
Trained at 94 schools, enhancing PWS education and support
150 advocates participated in over 130 congressional meetings during our 2024 D.C. Fly-In
Submitted several critical advocacy documents to the FDA, urging the approval of DCCR as a treatment for PWS and supporting the advancement of future treatments.
Launched the PWS United podcast, a platform for sharing resources and stories that strengthen community bonds and connection.
Hosted the inaugural PWS Residential Providers Conference, bringing together over 100 professionals from across the country to advance care and support for individuals with Prader-Willi syndrome.
Support PWSA | USA
Hope in Action
The Hope in Action series shares powerful stories of resilience and hope from the Prader-Willi syndrome community, highlighting the many ways PWSA | USA is making a difference. From school support to crisis assistance, advocacy, and more, each story showcases the real-life impact of our programs and the strength of our families.
School Success
At PWSA | USA, we know that navigating the education system can be challenging for families in the PWS community. In this Hope in Action story, we spotlight PWSA | USA’s School Support services and how they empower parents to advocate for their children’s unique needs. Hear firsthand from mom Sue Colon and CEO Stacy Ward how our dedicated team works alongside families to help ensure every child has the support they need to succeed in school. By supporting the 2024 Angel Drive campaign, PWSA | USA can continue to provide these life-changing services.
Medical-Behavior Crisis
This installment of our Hope in Action series highlights the essential role of PWSA | USA’s medical and family team and our 24-hour crisis support phone line. Through the voices of our dedicated team members Lynn Garrick and Kim Tula, and Gracie, whose daughter Angel faced a life-threatening crisis, this video shows the relief and hope our organization brings for moments that feel unmanageable, and for days when urgent help is needed. Gracie shares how Kim’s guidance during her daughter’s medical emergency in May 2024 made all the difference, illustrating the profound impact of the Angel Drive. Each donation ensures our 24-hour crisis support phone line and Family Support team remains available. Thank you for making a gift to help families like Angel’s face the hardest days with hope!
WINTER COLORING SHEETS
Download our Winter Coloring Sheets for a fun family activity this holiday season.
SHARE YOUR HOPE!
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.