This has been an incredible week for PWSA | USA and the rare disease community. In collaboration with RDLA and the Every Life Foundation, PWSA | USA took part in Rare Disease Week on Capitol Hill. We had the opportunity to represent our community and meet with Congressmen Tonko, Delgado, Bacon, and Senators Schumar, Gillibrand, Fischer, Rubio, Scott. Finally, our CEO Paige Rivard, had a one-on-one with Senator Ben Sasse. We raised our voices in support of the STAT Act and BENEFIT Act, both of which have the potential to be life-changing for caregivers, families and individuals with PWS.
The STAT Act will allow patients with a rare disease speedy access to therapies, inform rare disease policies and actions by creating a Rare Disease and Condition Drug Advisory Committee, fund regulatory science and related activities to support the development of therapies to treat rare disease populations.
The BENEFIT Act would require that the FDA disclose whether and how patient experience and/or preference data was used in the benefit risk assessment of a new drug. It will ensure that patient voices are being heard and allow for patient stakeholders to continue to work with FDA to refine the data that they need to make decisions.
We encouraged members of congress to co-sponsor and support both pieces of bi-partisan legislation and look forward to working with our elected officials to continue to advocate on behalf of the PWS community.
“Rare Disease Week on Capitol Hill is a unique opportunity to bring together policy experts and the rare disease community to help educate all on the important issues facing the rare disease community. PWSA | USA participated in the many sessions held during the week, and we met with Congressman and Senators from several states. It was an honor to represent the PWS community, share and advocate on behalf of Prader-Willi syndrome and bring awareness and our voice to Capitol Hill!”
– Paige Rivard, PWSA | USA CEO
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.