Thank you to our PWS community for helping us shine a light on Rare Disease Day! This year, the National Organization for Rare Disorders (NORD) focused on encouraging buildings, landmarks, and monuments around the world to participate in a chain of lights to recognize Rare Disease Day. We are excited to share that many buildings/landmarks/monuments showed their support and shined bright with purple, pink, green and blue lights. With the help of our PWS community, the following buildings/landmarks/monuments accepted our requests:
The Bank of America Plaza in Dallas, TX
The Union Plaza in Little Rock, AR
The Capella Tower in Minneapolis, MN
The Florida State Capitol's Old Capitol Steps
The Lowry Bridge in Minnesota
The Miami Freedom Tower in Miami, FL
The Bob Kerry Bridge in Omaha, NE
I-35W St. Anthony Falls Bridge in Minneapolis, MN
A few other familiar locations that showed their Rare Disease Day pride included:
Leaning Tower of Pisa in Pisa, Italy
The Colosseum in Rome, Italy
CN Tower in Toronto, Canada
Nkrumah Mausoleum in Ghana
Hylton Castle in the U.K.
Eiffel Tower in Paris, France
Tokyo Tower in Japan
Burj Khalifa, a skyscraper in Dubai, United Arab Emirates
MetLife Stadium in New Jersey
National Institutes of Health Building 1 in Bethesda, Maryland
Gov. Mario M. Cuomo Bridge in New York
Empire State Building in New York
Philadelphiaโs Boathouse Row Community Hall in The City of Newberry
Terminal Tower in Cleveland, Ohio
Veterans Memorial Bridge in Chattanooga TN
Zakim Bridge in Boston, MA
Lower Free Bridge in Trenton, NJ
The National Institute of Health in Washington, D.C.
+ SO many more (see images below!)
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Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย Teaching Exceptional Children.
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.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs degree in Education with a focus on elementary education, special education, and language arts.
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.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.