PWSA | USA partnered with TREND Community to help further PWS research through conversations. For two years, TREND collected data from Facebook group conversations to gain important insight into the issues families were facing.
Please note that there was no personal information attached to the data that was collected, but merely the keywords and topics that were being discussed. Some of this data has already fostered and shaped ongoing PWS trials.
In 2016, Dr. Daniel Glaze and Amee Revana of Texas Children’s Hospital (TCH) used TREND insights to reveal that narcolepsy and cataplexy symptoms are commonly experienced by our community. These data convinced Harmony Biosciences to pursue a clinical trial to study pitolisant in patients with Prader-Willi syndrome. TCH, TREND, and Harmony partnered to write this important recommendation on the diagnosis and management of sleep disorders in Prader-Willi syndrome: https://jcsm.aasm.org/doi/10.5664/jcsm.9938
You can read and review the Launch Report that came from two years of data collecting from social media groups.
TREND Community has moved to a new platform called Discord. The community is encouraged to download Discord and join the PWS Connect community to help further PWS research through conversations and connections. Again, any data collected from this platform is de-identified, meaning there is no personal information connected to the data collected.
If you would like to help further PWS research through conversations, please join us in PWS Connect on Discord. Here’s how:
- Fill out the brief application using the button below.
- Check Your Email: Look for an invitation link to join our Discord community.
- Join the Community: Click the link to become part of our supportive network.
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.