We are sharing details on behalf of The Foundation for Prader-Willi Research (FPWR) to spread the word about an upcoming and important PWS research opportunity. FPWR is collaborating with COMBINEDBrain to establish a biorepository dedicated to blood and urine samples. This initiative aims to expedite the development of treatments for individuals with Prader-Willi Syndrome, as well as other neurodevelopmental disorders.
Biorepositories hold immense significance in the realm of rare disease research by serving as centralized hubs for the collection, preservation, and distribution of various samples such as tissues, blood, and cells derived from individuals. The samples procured for the PWS-COMBINEDBrain Biorepository will be accessible to researchers globally. This accessibility will facilitate endeavors related to identifying biomarkers and conducting molecular investigations. Furthermore, this effort guarantees the sustained availability of these scarce disease samples for prospective research initiatives.
FPWR will work to gather these samples in partnership with the COMBINEDBrain group. Throughout the remainder of 2023, they will be assembling specimens at various ROADSHOW conferences and gatherings nationwide. If you're interested, you have the opportunity to connect with the team during their ROADSHOW events in your vicinity and contribute a specimen that will be stored in the PWS-COMBINEDBrain Biorepository. You can find more details and ROADSHOW locations below.
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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.