On December 6, 2023, Director of Community Engagement Dorothea Lantz was the keynote and opening speaker for the first annual Rare Conversations. This rare disease policy forum was organized by Alexion AstraZeneca Rare Disease and focused on how to advance the needs of people living with rare disease and their caregivers by working with state and federal officials. Also in attendance for this important conversation surrounding rare disease was Annie Kennedy, Chief of Policy, Advocacy & Patient Engagement at EveryLife Foundation, Heidi Ross, Vice President of Policy and Regulatory affairs at the National Organization for Rare Disease, Representative Cathy McMorris Rodgers (R-WA), Jason Resendez, President and CEO at National Alliance for Caregiving, congressional staff and the U.S. Food and Drug administration.
Rare Conversations provided an opportunity to not only stimulate the knowledge of our community’s needs, but it also provided specific recommendations for policy change.
The week of December 11, 2023, Dorothea was invited to represent our organization and our PWS community at EveryLife Foundation’s Community Congress year-in-review in Washington, D.C. This annual, in-person event provided an opportunity for members to participate in a comprehensive review of 2023, and to establish our rare disease collective policy priorities for 2024.
The event was attended by patient advocacy organizations, policymakers’ industry, and governmental agencies. The agenda included presentations, panel discussions, table brainstorming sessions and group breakout sessions.
The Community Congress is dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together. The Congress acts as a coalition of collaborators with shared priorities, providing strategic guidance and insight on policy issues and Foundation programs. PWSA | USA is honored to represent the “voice” of our community and will continue to fight for PWS initiatives!
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.