There are many ways to raise awareness for a cause you're passionate about but personal stories typically create the biggest buzz and generate the most attention. It's often difficult to find a starting point - how do I get my story out and who do I send it to? We're here to help! Ahead of PWSA | USA's much-anticipated and first-ever D.C. Fly-In event, we are asking our community to consider writing their own op-ed piece to gain interest and momentum around this event, and in-turn, our community's needs.
The D.C. Fly-In is the centerpiece to PWSA | USA's 2022 Advocacy initiative. This exciting, in-person event will take place September 19 - 21, 2022 in Washington, D.C. and provide an opportunity for our state activists to expand their efforts and engage their individual members of Congress.
Our platform will be to encourage a non-partisan resolution declaring May 15, 2023, and every year thereafter, as PWS Awareness Day in the United States. It will also give our advocates an opportunity to speak in support or opposition of legislation that affects all of the rare disease community.
Leading up to this exciting event, we are asking our community to help us get the word out by writing an op-ed piece and submitting it to your local news outlets. PWSA | USA's Community Engagement Specialist Dorothea Lantz recently attended We The Patients' Washington, D.C. Fly-In event, and wrote her own op-ed piece to help them raise awareness. From her efforts, multiple media channels have reached out for interviews, including Miami's ABC news station. On Thursday, June 23rd, Dorothea and her family were interviewed by WPLG about Prader-Willi syndrome, her son's needs, and PWSA | USA (see behind-the-scenes pictures above). The news piece is set to air around the second week of July, and we will share it on PWSA | USA's website for you to watch.
Several more of our advocacy volunteers have written their own op-ed pieces as well, and have received calls from their local stations and newspapers. It is an extremely powerful tool that can help get PWS and our community's needs across to a larger audience.
If you are interested in getting this process started and helping us raise awareness for the September D.C. Fly-In event, click on the button below to view our Op-Ed Template. You can also reach out to us at advocacy@pwsausa.org for any assistance or if you have any questions.
Thank you for your help!
Apply to attend PWSA | USA's 2022 D.C. Fly-In by clicking the button below
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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.