contributed by Cocoa Ma (Mom to Lenny, a 12-year-old living with PWS)
Lenny has been passionate about art since he was 4 years old. Over the years, his dedication has led to several international awards, and his art has become not just a creative outlet but also a way for him to give back to the community. This year, in collaboration with Art Spark Texas, Lenny exhibited 11 of his artworks and raised $50,000 for charity.
Most recently, Lenny participated in a local Children’s Business Fair, where he showcased his entrepreneurial spirit and commitment to hard work. The organizers had set 1:30 PM as the earliest time for vendors to start setting up, but with Lenny’s excitement and constant urging, we arrived early and began setting up at 1:00 PM. The fair officially started at 3:00 PM, but Lenny was already in full “business mode” and made his first sale at 2:00 PM—to a neighboring vendor!
As the crowd grew, Lenny became increasingly engaged. With unwavering enthusiasm and patience, he introduced his products and artwork to every guest who passed by, as if his little booth was his own world, filled with his passion and dreams. Around 5:00 PM, as the sky began to darken and the weather turned cold with rain, the flow of customers started to dwindle. Feeling anxious, Lenny quickly came up with an idea. He picked up the tote bags and bookmarks and began calling out loudly, “Tote bags for just $5—only $5 and it’s yours! Bookmarks for $1—just $1!” His voice was clear and sincere, immediately drawing a new wave of customers to his booth, making it lively once again.
Even when the event ended at 6:00 PM, Lenny was still reluctant to leave. His eyes sparkled with excitement, showing that this wasn’t just a business experience but also a journey of growth. On this chilly winter day, he brought warmth and inspiration, showing us a determined, courageous, and passionate version of himself.
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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.
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.
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.
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.
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.