The Prader-Willi Syndrome community is invited to attend our first Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting at PWSA USA’s National Convention this summer.
This meeting provides an opportunity for patients, caregivers, and advocates to share their perspectives and experiences with the FDA and drug developers. By attending this meeting, you can make your voice heard and help shape the development of new treatments and therapies for Prader-Willi syndrome. Together, we can work towards improving the lives of those affected by this rare and complex genetic disorder.
Don’t miss this chance to be part of the conversation and make a difference in the future of PWS treatment options. You can choose to attend the FREE in-person EL-PFDD when you register for PWSA | USA’s 37th National Convention OR you can attend virtually by clicking here.
Ahead of the event, we are collecting testimonials from our PWS community. You can share your personal story, the struggles your family and loved one living with the syndrome have faced, or anything else you want others to consider. These testimonials will be included in our Voice of the Patient Report, which becomes published papers.
This will allow pharmaceutical companies access to the report so they can develop protocols that best fit our community’s needs. Meaning, with this report, WE can help with the development of drugs to help our entire community. Share your testimonial by clicking here.
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.