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 December Donor Spotlight is Elaine Towle, who is a longtime supporter of PWSA | USA and contributes her time as a member of our Communications and Editorial Committee.
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When did you learn about James' PWS diagnosis?
James (35) was tentatively diagnosed with Prader-Willi Syndrome within days of his birth – almost unheard-of in 1986. The genetics doctor gave us a little information and referred us to Dr. Suzanne Cassidy, who at that time was in Connecticut. We made the trip from New Hampshire to Connecticut a couple of times a year – Dr. Cassidy was our only link to the Prader-Willi world, in the time (oh so long ago!) before the internet. When James was about 18 months old, we went to a Prader-Willi Conference in Connecticut and met other families for the first time. I remember so clearly an older couple telling us how “lucky” we were that he was diagnosed so young – we didn’t fully appreciate that until years later – but they were right. We were lucky to have even a tentative diagnosis, to get plugged in to early intervention services by the time he was six months old, and to meet Dr. Cassidy. I think that conference was also the first time we heard of PWSA | USA. A few years later, we found a PWSA | USA publication and that was world-changing – so much information in one place!
What motivates you to donate to PWSA | USA?
We have always been so thankful for the resources provided by PWSA | USA – the old Gathered View newsletter, the brochures and books, the Medical Alert booklet, and more recently, things like the GI algorithm. The people at PWSA | USA were so helpful when James was initially denied for SS benefits, for example. Practical, useful tools that make such a big difference. Donating is such a small thing that we can do to make sure PWSA | USA is there for other families as well.
Is there anything you’d like to share with other families, or any advice you would like to give?
For young families with newly-diagnosed babies, my first advice is to breathe….. Enjoy your little one and take it one day at a time. Second, connect. Start with PWSA | USA and then connect with other families. Take advantage of the knowledge and resources from people who have gone before you and the scientific advances happening every day.
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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.