It has been said that each of us needs just three things to be truly happy in this world: someone to LOVE, something to HOPE for, and something to DO. Together with our Prader-Willi syndrome community near and far, our mission requires all three.
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: We unite in hope to transform those efforts into opportunities for our loved one that leads to a life filled with possibility. We move forward each day with positivity and determination because we know with certainty that our loved one with PWS has a bright future ahead, despite the challenges they face.
WE DO so much from the moment our loved one with PWS enters the world…
This holiday season, we invite you to share your HOPE for your loved one with PWS (or the PWS community) when you fill out our online donation form. Why? Because your message of hope will become part of a thread of hope connecting all of us near and far as we begin a new year.
Additionally, we’d like to ask for your support with a year-end contribution to help ensure we can continue TAKING ACTION for all those affected by PWS. Whether it’s raising our voices with legislators in Washington, D.C. about issues that matter most, helping to navigate through a medical emergency, or providing family support as you appeal for benefits—we are by your side every step of the way!
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.