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 January Donor Spotlight is Rob Lutz, who is a PWSA | USA Board Member and longtime supporter of our organization.
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When did you learn about Isabel's PWS diagnosis?
Isabel (now 22) was born floppy and was diagnosed at six months old. We found PWSA | USA within a couple days of her diagnosis and reached out to get information and support. With PWSA | USA’s guidance, we were able to immediately begin programs such as PT/OT/ST to help Isabel be all that she could be.
Isabel was behind on milestones throughout her childhood but she started school on time. Luckily, we were in a supportive school system so she received a lot of support from the beginning. We were able to use materials from PWSA | USA to help educate her schools and caregivers about PWS and how she could best learn.
Isabel gradually fell behind her classmates academically and exhibited more and more food seeking behaviors and behavioral problems. After speaking with PWSA | USA and the contacts we made through PWSA | USA, we understood that this was generally typical. Those contacts were invaluable as a source of knowledge and comfort. We have always said that we share a special bond with any PWS family because we all have lived through this unique experience.
Isabel affected our family in a wide variety of ways. We have moved a couple times to make her situation as optimal as possible. We set up our lives and jobs to support her at times. PWS, at times, dominates our lives. It was important to have PWSA | USA to help. As an example, Isabel was going through a rough patch behaviorally in high school. We were able to get help from a PWS expert we had met through the association. That made a critical difference for Isabel.
What motivates you to donate to PWSA | USA?
We donate to PWSA | USA because we benefited from everything that PWSA | USA does on behalf of PWS families. We want to ensure that other families (new families, families in crisis, or families with less ability to navigate PWS) have access to PWSA | USA and its resources. PWS is challenging and everyone should have access to the expertise, comfort, and connections provided by PWSA | USA. We are honored and proud to be donors.
Is there anything you’d like to share with other families, or any advice you would like to give?
We’d like to give three key pieces of advice to other families:
1) Love your PWS child/grandchild/sibling/friend for who they are. Individuals with PWS are amazing in many ways and they should be appreciated for that. Be proud of your individual with PWS no matter how difficult they can be (By the way, my PWS child is literally yelling at me right as I am typing).
2) Take advantage of PWSA | USA. It is there to help you navigate PWS. Experts and information are always available at no charge.
3) Be involved in the PWS community. Go to Conference. Meet up locally. Be a mentor. Participate online. Many of our best friends are from the PWS community. We have learned so much from talking with others in the community. Plus, they will be able to understand what you are going through like none others. And they need you too.
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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.