Shared on behalf of Harmony Biosciences:
As we move into the holiday season, we all look forward to the meaningful moments that make this time of year special: time spent together, family traditions, and a chance to settle into a quieter winter rhythm. For those supporting someone with PWS, the day-to-day challenges of excessive daytime sleepiness can make enjoying these moments to the fullest more challenging.
As a new year approaches, please consider taking part in the TEMPO clinical study to further research focused on excessive daytime sleepiness in PWS. With the completely at-home study option, you can contribute to PWS research entirely from the comfort of your home!
Alternatively, you may choose to participate at one of our 18 clinical study sites around the country, and be rest assured that all your travel needs are fully covered such as transportation, parking, meals.
Qualified participants:
– Are 6 years of age or older
– Have a diagnosis of Prader-Willi syndrome
– Have excessive daytime sleepiness
To learn more about the TEMPO clinical study, visit www.tempopwsstudy.com. You can find out if your child is eligible to participate by answering 7 simple questions in our eligibility questionnaire. Please note that the questionnaire is not a complete list of eligibility requirements and completing the questionnaire does not mean that a care recipient agrees to participate in the study.
Wishing you and your family a joyful holiday season!
– The Team at Harmony Biosciences
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.