Our advocates are in Washington, D.C. this week for Rare Disease Week (February 28 is Rare Disease Day!). On Wednesday they will be meeting with their representatives to advocate for PWS and the rare disease community. While not everyone can travel to D.C. themselves, you can get in touch with your representative via phone or email to let them know you would like their support for these legislative “Asks.”
Whether you are calling or writing, every voice counts!
How To Participate:
Send a Letter
Below are the “Asks” our advocates are taking to their representatives in both the House and the Senate. Click on the “Ask” to learn more and easily send your representative a letter urging them to support the “Ask”.
Call your Representative
Find your representative’s contact information HERE. Be prepared to leave a voicemail with your name, street address, and zip code, along with the stated “Ask”. There likely won’t be time to read the entire letter but feel free to add information from the letter if there is time or you reach a person.
Rare Disease Week “Asks”
- Support Steady and Robust Leadership, Federal Biomedical Research Funding, and Public Health Agencies
- Support the Reauthorization of the Rare Pediatric Disease Priority Review Voucher Program
- Cosponsor the ‘Accelerating Kids’ Access to Care Act (AKACA)
More Information
For more information and tips on advocacy, visit our Advocacy webpage at Advocacy & Awareness – Prader-Willi Syndrome Association | USA
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.