Five in Fifteen PWSA | USA Federal Public Policy Webinar Series – Part 2
Join PWSA | USA for a mini webinar series on the issues you care about. During these 15-minute live webinars, you will learn about the various ways you can advocate for our current federal policy priorities and how you can make a lasting and sustainable impact for those affected by PWS.
Title: Access to Genetic Counselor Services Act of 2019 (H.R. 3235)
Date: Monday, October 5
Time: 12:00-12:15 PM Eastern / 11:00-11:15 AM Central / 9:00-9:15 AM Pacific
Description: Learn more about how H.R. 3235 will allow Medicaid and Medicare beneficiaries to be seen by genetic counselors, ensuring that they receive the benefits of the rapidly advancing field of medical genetics in a timely, cost-effective, and professional manner.
Registration: https://us02web.zoom.us/meeting/register/tZIpduiqpj8oE9TYqxPyiVVbk8fHbkQXYtv_
After registering, you will receive a confirmation email containing information about joining the meeting.
Title: Advancing Access to Precision Medicine Act (H.R. 4393)
Date: Tuesday, October 6
Time: 12:00-12:15 PM Eastern / 11:00-11:15 AM Central / 9:00-9:15 AM Pacific
Description: Learn more about how H.R. 4393 will ensure that children and young adults living with an undiagnosed condition will have access to DNA sequencing clinical services that are currently out of reach to provide a timely and accurate diagnosis.
Registration: https://us02web.zoom.us/meeting/register/tZIpduyhqj0sHdDn5j-6F8upLWnk6WbATQpD
After registering, you will receive a confirmation email containing information about joining the meeting.
Title: Creating Hope Reauthorization Act of 2019 (H.R. 4439 / S. 4010)
Date: Wednesday, October 7
Time: 12:00-12:15 PM Eastern / 11:00-11:15 AM Central / 9:00-9:15 AM Pacific
Description: Despite the significant unmet medical need, pharmaceutical companies have been reluctant to develop drugs for PWS, since the high costs are unlikely to be recouped following approval. Learn more about how the Creating Hope Act will make novel therapies for pediatric rare diseases a priority.
Registration: https://us02web.zoom.us/meeting/register/tZMtf-yupjktGtGGlVKmBFghIt_c_Y22Fqo0
After registering, you will receive a confirmation email containing information about joining the meeting.
Title: Helping Experts Accelerate Rare Treatments (HEART) Act of 2020 (H.R. 7567)
Date: Thursday, October 8
Time: 12:00-12:15 PM Eastern / 11:00-11:15 AM Central / 9:00-9:15 AM Pacific
Description: Many medical experts in PWS clinical trials have never treated PWS patients or had much experience with the disease. If passed, this legislation would ensure that PWS experts and patients are more involved in the US drug review process.
Registration: https://us02web.zoom.us/meeting/register/tZEudOqvpjIoHNBxGey6F28-yUsjaDvc3zXM
After registering, you will receive a confirmation email containing information about joining the meeting.
Title: PWS Awareness and Education
Date: Friday, October 9
Time: 12:00-12:15 PM Eastern / 11:00-11:15 AM Central / 9:00-9:15 AM Pacific
Description: Effective advocacy is essential to ensuring health, safety, and enhanced quality of life for those affected by Prader-Willi Syndrome. Learn how to raise awareness amongst your public and elected officials to guarantee the passage of legislation and regulations that help your community.
Registration: https://us02web.zoom.us/meeting/register/tZAvcOitqj4pHdG00WMmfUv7oG2kCHFqFBFo
After registering, you will receive a confirmation email containing information about joining the meeting.
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.