Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how they've received a Rare Disease Day Proclamation from their local city officials.
Leslie and Corey Fuller are parents to James, living with PWS, and were inspired to reach out to their local government. Below, they share the steps they took to get a Rare Disease Day Proclamation and more about why they advocate.
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What motivated you to reach out to your local government/officials?
The PWS family that motivated us. James is our hero! He’s the strongest, kindest, most loving soul. We want to share his story with our community an hope that we reach a kiddo / family that might not have found their voice yet. We’ve taken one small step so that we and others may take many more.
Why do you encourage others to do the same and what is the best first step you recommend they do?
PEACE. Pay your experience forward; we’re all individuals! We are all so much more alike than different. It feels good and healthful to share PWS. The best first step, is to take a step. Call, email, or write your local government officials, representatives, and senators. It’s not nearly as intimidating as you think.
How did you receive the proclamation and what was that experience like?
We’ll be presented with the Proclamation on Monday, 2/27.
What inspires you to advocate for PWS?
James, Education, Families, Love. Those who came before us and those who come after. We’re so grateful to be a part of the PWS community. We’re inspired by James’ providers, grandmas, aunts and uncles, cousins, and friends. It takes a village!! We’re so incredibly grateful that our family is as amazing as our PWS Family.
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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.