PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing the dedication, gratitude, and optimism that defines us as a PWS community!
Our October Donor Spotlight is Steve Leightman, who has been an incredible supporter of PWSA | USA over the years. Steve was a member of PWSA | USA's Board of Directors and currently volunteers for the association's Fund Development Committee. He is also a grandparent to Joslyn (19) who is living with PWS.
Steve shares his family's journey with PWS, what motives him to donate, and some helpful advice for other grandparents navigating their own PWS journey below.
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Q: When did you learn about Joslyn's PWS diagnosis?
A: Joslynโs journey began at birth, when my wife said โsomething is wrong with the baby," and the never-ending search for answers started. First with the doctors at the hospital, then with a call to PWSA | USA. Today the search continues. At first our focus was whether she would live, but now it is HOW she will live, due to intervention from high school in 2020. ย
Q: What motivates you to donate to our organization? ย
A: Our first contact with the Association came at a time of great angst for our entire family. Throughout my 19 year history in various roles with PWSA | USA, I found needed support and a need to โgive backโ to others some of the gifts afforded to me.
Q: How did you learn about PWSA | USA?ย ย
A: Once we received Joslyn's diagnosis, we found PWSA | USA via the website.
Q: Is there anything youโd like to share with other families, or any advice you would like to give?ย ย
A: A grandparent does not carry the burden of a parent with a Prader-Willi child, BUT we have an extra layer of concern โ our granddaughter AND our daughter. Our experience is to always be there for support, to look to a future brighter than we foresaw two decades ago, and to cherish every day we have together. We understand the limits and challenges PWS presents, BUT we try to ย remember that PWS does NOT define Josi any more than being too tall or too short defines anyone. Josi is a young woman with unique talents who just happens to have PWS. There is more to this story as new chapters get written every day.
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Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย 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 Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs 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 Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.