JOIN THE EFFORT TO LIGHT UP A LANDMARK ON 2/28/2023
Step 1: Light Up
When you have confirmation that your request is approved, make sure to let NORD know so we can track it in our coverage of the Global Chain of Lights!
Step 2: Sign Up
Complete the applications as required by the places you are pledging to light up. Let us know what landmarks you are pledging to light up for Rare Disease Day. It could be your state capitol building, historic house, local school or university, stadium, bridge, place of business, point of interest, monument—the sky is the limit.
Step 3: Share
Don’t forget once the buildings and landmarks are lit up in Rare Disease Day colors to share a picture on social media. Be sure to tag NORD and use #RareDiseaseDay and #ShowYourStripes so the entire community can see what we have done to shine a light on rare disease!
If you have any questions, please reach out to
marketing@rarediseases.org.
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.