Launching on January 13, 2025, the PWS Advocacy Master Class is a six-week program designed in collaboration with Patients Rising. It provides a robust curriculum for anyone passionate about becoming an effective advocate for PWS.
Course Highlights:
- – Congress 101: A deep dive into how laws are made and how to engage with policymakers.
- – Pharmacy Benefit Managers & Pricing Policies: Understand how these systems affect access to PWS therapies.
- – Effective Storytelling: Learn how to craft and share your personal journey to inspire change.
- – Disability Rights & Clinical Trials: Explore advocacy avenues in education, work, and treatment innovation.
- – Public Speaking & Letter Writing: Gain confidence in presenting to legislators and writing impactful letters.
- – Final Project: Graduates will complete either a legislator letter or an advocacy video to showcase their skills.
- Participants will graduate with an e-Certificate of Completion and a working knowledge of advocacy techniques. The course combines live sessions, self-guided lessons, and practical exercises to ensure a comprehensive experience. If you or someone you know would like to participate, please click the button below to join the Patient Rising Community BEFORE January 13th! The course will be available in the Circle app portal on January 13th.
- If you have any questions, email Dorothea Lantz at dlantz@pwsausa.org or reach out directly to Jim Sliney at Patients Rising via email at jsliney@patientsrising.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.