Welcome to PWS United, a podcast for the Prader-Willi syndrome community, brought to you by PWSA | USA. This podcast seeks to inform the community (and beyond) of the latest news in research, advocacy, and our family support offerings. By bringing together staff, volunteers, specialists in PWS treatment, representatives from biotech and pharmaceutical companies, caregivers, family members, and individuals living with PWS, we hope to facilitate necessary connections between education, awareness, and resources, and those living with PWS and the family and caregivers who support them. Please join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.
PWS United Podcast
Podcasts have been around for almost two decades, but for those new to the concept, here are some basic instructions to help you navigate this new platform. Please note that following the podcast, downloading episodes, rating, leaving a review, and sharing the podcast or specific episodes on social media or with friends are crucial to getting our podcast seen by a larger audience. Through the growth of this podcast, we hope to reach even more families in the PWS community who may be struggling and looking for necessary support.
If you prefer to listen to our podcast via a website rather than a phone app, please click here.
Below are instructions for the most popular podcast apps. Instructions should be similar across apps.
FOLLOW the podcast on your podcast platform of choice. Following the podcast ensures that you will stay up-to-date on the latest episodes as they come out. Following our podcast is free and available to anyone with the proper apps.
- *Apple Podcast App: Click the “+Follow” button at the top right of the podcast screen.
- *Spotify App: Click “Follow” on the podcast page / Click “+” on the episode page to save specific episodes.
RATE and REVIEW help our podcast move up the charts and into the algorithm, so more PWS families can find us.
- *Apple Podcast App: On the show page, scroll down to “Ratings & Reviews.” Tap the stars to leave us a rating. Click “Write a Review” to say a few words about what you think of our podcast.
- *Spotify App: On the podcast page, click the three dots and choose “Rate Show” in the pop-up window.
SHARE with friends and family via text and email, as well as sharing and posting on your social media pages.
- *Apple Podcast App: On the show page, click the three dots at the top right corner. (Follow the show if you haven’t already). Click “Share Show” and click who you want to send it to in the pop-up below. You can also select “Copy Link” and share it on your social media platform.
*Spotify App: On the Podcast Page, click the three dots and choose “Share” in the pop-up window.
PWS United Podcast Listening Platforms:
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.
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.
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.
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.
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.