submitted by Sarah Kasaby, mom to Khaled (living with PWS)
This weekend’s United We Brunch was more than I could have imagined — full of warmth, support, connection, and purpose. Thank you to everyone who came out, asked questions, donated, shared, and simply showed up with open hearts. 💛
As we gathered around delicious and healthy homemade dishes (yes, the hummus and tahini were a hit! 😉), we shared stories, laughter, and tears. I opened up about our family’s journey — how we found out about the diagnosis, what it meant, and how it’s shaped our lives ever since. We talked about the incredible advocacy work that PWSA | USA is doing, and the international outreach we’re involved in through PWSA, bringing families and professionals together from all over the world.
One of the most moving parts of the day was seeing the connection among families. Two PWS families joined us at our special table — one mom drove over an hour with her 1-year-old son, and another generously shared her experience raising her 15-year-old. ❤️
Our conversations stretched beyond PWS. Families shared our story with others they know facing different challenges, and we had meaningful discussions about IEPs, 504 plans, and navigating special education. I was so happy a dear friend of mine — a special ed teacher — joined the conversation and offered great insights. And one moment that truly touched my heart: my son’s OT, who’s been walking this journey alongside us for quite some time, came to show his support. His love and commitment to my son are so deeply appreciated and having him there meant the world. 🧡
Thank you again to everyone who made this day so special. Your support helps raise awareness and hope for families like ours, and reminds us that together, we’re never alone.
Visit Sarah and Khaled’s fundraising page using the button below.
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.