Volunteer Appreciation Week: Thank YOU for being Part of our CommUNITY!
Over 45 years ago, PWSA (USA) was founded by volunteers. It remained a fully volunteer-run organization until 1980 when our first paid Executive Director was hired (the next paid staff wasn’t hired until 1984!). While the number of staff has grown to 14, our incredible community of volunteers has grown to include hundreds of dedicated supporters who donate their time and talent to helping us save and transform lives.
From our board of directors, to our parent mentors and chapter leaders, to the many more committee and advisory board members, our volunteers bring a wide range of knowledge and skills PWSA (USA) empowering us to support our families while educating and advocating for the PWS community at the individual, state and federal level.
Over the years, parent mentors and chapter leaders have supported and provided information and resources to thousands of families, helping to ease fear by ensuring no one walks the Prader-Willi syndrome journey alone. The Scientific, Clinical, Special Education and Professional Provider Advisory Board members continue to share their expertise which has already led to ground-breaking research, standards of care, and best practices for those treating and supporting individuals with PWS.
One group of volunteers we especially celebrate this Volunteer Appreciation Week is our PWS Adult Advisory Board. These men and women provide insight and feedback to the organization that only someone living with Prader-Willi syndrome can. Their insight guides every decision we make and inspires the programs and resources we provide. And, most importantly, they remind us all that individuals living with PWS should always be at the forefront of our collective minds. For without this, everything else we do would be remiss.
Thank you to all our selfless, generous, thoughtful volunteers. You make a real and meaningful difference every single day. We are #StrongerTogether. Thank you.
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.