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.
Sue Colon, mom to Shealynn (3) living with PWS, is one of these parents who received a Rare Disease Day Proclamation in the Township of Monroe, New Jersey. Below, Sue shares the steps she took to get the Proclamation and what motives her to share her rare!
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What motivated you to reach out to your local government/officials?
My motivation for reaching out to my local officials was to raise awareness and bring attention to PWS and all rare diseases that affect so many of our children and families.
Why do you encourage others to do the same and what is the best first step you recommend they do?
I encourage others to do the same because people do want to help, but we can’t receive help without asking and discussing the challenges and needs of our rare community. Raising awareness is essential to PWS and other rare diseases. Awareness can open doors to much needed resources like funding, research, and development of treatments.
As a first step, I created a letter introducing myself, my loved one affected with a rare disease (PWS), and the symptoms and challenges our community faces. I kindly requested their help in raising awareness by illuminating in Rare Disease colors on February 28th, giving a Proclamation or, spotlighting PWS in local newspaper coverage. I also followed up with a call and email.
How did you receive the proclamation and what was that experience like?
Our local mayors office contacted us almost right away and offered their full support. We had a meeting with Mayor Dalina and discussed PWS symptoms, the challenges, and our need for awareness. It was a very empowering experience to be the voice for my daughter and so many other individuals living with PWS and any other rare disease.
What inspires you to advocate for PWS?
My inspiration is my daughter Shealynn. I have watched her overcome so many struggles and obstacles due to PWS. I decided to help her fight back through advocacy. I like to call it "making noise." She is a courageous little girl and she, along with our other PWS friends, deserve an opportunity to live longer, fuller, independent lives.
You can see a photo copy of the Proclamation Sue received below. We also encourage you to learn more about Rare Disease Day and how you can get involved by clicking here!
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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.