submitted by Stacy Ward, PWSA | USA CEO
Each year, during National Direct Support Professional Week (September 7-13, 2025), we pause to celebrate the incredible individuals who dedicate their careers to supporting people with disabilities. At PWSA | USA, we know firsthand how essential these professionals are to the lives of children and adults living with Prader-Willi syndrome.
Direct Support Professionals (DSPs) are the backbone of care. They provide more than day-to-day supervision, they ensure dignity, safety, independence, and opportunity for those they support. Working with individuals who have PWS requires a unique combination of compassion, patience, vigilance, and skill. From carefully managing food security, to navigating challenging behaviors, to offering encouragement and joy in daily activities, DSPs make an extraordinary difference every single day.
Their work is not easy. DSPs face long hours, emotionally demanding situations, and a profession that is too often undervalued, underpaid and underrecognized. Yet, despite these challenges, they continue to show up with dedication, creativity, and love. They are teachers, mentors, advocates, and caregivers rolled into one. For families and for our entire PWS community, they are indispensable partners in ensuring that our loved ones can live fuller, healthier, more meaningful lives.
This recognition is personal to me as I began my career as a DSP. It was, without question, the most rewarding job I have ever had. The experience of supporting individuals with PWS taught me invaluable lessons about patience, resilience, and the power of human connection. It gave me a deep respect for the everyday heroes who walk alongside families in this journey, a respect that grows even stronger each year.
As we honor DSPs this week, I encourage families and communities to take a moment to recognize the DSPs in their lives. A handwritten note, a kind word of gratitude, or a small token of appreciation can make a lasting impact. These gestures may seem simple, but they affirm the deep value of the work these professionals do and remind them that they are not alone in this journey.
At PWSA | USA, we see you, and we thank you. To every Direct Support Professional who supports a person with Prader-Willi syndrome: your work matters, YOU matter. You are making the world a safer, kinder, and more hopeful place for our loved ones and for our entire community.
This DSP Recognition Week, and every week, we celebrate your unwavering commitment and extend our heartfelt gratitude for the difference you make in the lives of individuals with PWS and their families.
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.