TREND Community is a “community-powered data analytics company, unlocking people’s conversations about living with rare and chronic diseases, delivering actionable, real-world insights, and driving progress in health care.”
For 2.5 years PWSA | USA has been partnering with TREND Community to turn our online support groups into a source of real-world evidence. By collecting the most frequently discussed terms in the Facebook group discussions, TREND was able to gather insights that shed light on under-recognized symptoms and our community’s unmet needs, fueling critical research for our community. Our privacy is always protected. Only non-identifying data is used for research, with progress shared within the community.
Due to recent Facebook policy updates and limitations, TREND Community has shifted its research efforts to PWS Connect on Discord. We are inviting the PWS community to join us there!
What You’ll Find in PWS Connect
Everyone in the PWS community can join PWS Connect; parents, grandparents, siblings, caregivers, individuals with PWS, etc. There are multiple thematic discussions and groups to participate in. The age-specific groups are for parents only. Once your survey is filled out and processed, parents will automatically be added to appropriate age groups.
Once you join PWS Connect, please share your story under the “Journeys” channel so that everyone can get to know you.
Why You Should Join
TREND insights linked PWS to narcolepsy!
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
TREND insights accelerate drug development!
Several biotech and pharmaceutical companies have used TREND insights to request orphan drug designation from the FDA for PWS and other rare diseases. Orphan drug designation is critical to stimulate the development of treatments for rare diseases by offering significant incentives and support to biotech and pharmaceutical companies.
TREND insights map the community lexicon to medical terminology!
TREND insights helped doctors understand the language that our community uses when we talk about under-recognized symptoms. For example, many parents reported their kids faking sleep or experiencing strange sleep attacks. We now know that these experiences are likely related to narcolepsy and cataplexy. We believe that TREND insights can also give us important clues into hyperphagia to help us better understand this devastating symptom and develop promising treatments.
Together, PWSA USA and TREND Community will revolutionize the world’s understanding of PWS!
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.