If you’ve ever received a New Diagnosis Care Package from PWSA | USA, there’s a good chance it was carefully prepared by Ella Frazier. Ella is the sister of Joseph (JoJo), who lives with Prader-Willi syndrome, and from the very beginning, she has played an important role in his journey. Her care and compassion shine through in every box she helps assemble.
Ella’s commitment to service comes naturally. She is the daughter of Angela Frazier, PWSA | USA’s Event Planner, and it’s clear she shares her mom’s eye for detail and heart for helping others. Watching her mother work with PWSA | USA over the past four years inspired Ella to get involved herself. What started as lending a hand quickly became a meaningful way to support families just starting their PWS journey.
Now a sophomore in high school in Austin, Texas, Ella is motivated by her experiences caring for and advocating alongside her family. She hopes to become a nurse one day, and in the meantime, she continues to find ways to make a difference for the PWS community. Ella is especially excited to attend PWSA | USA’s D.C. Fly-In in May, where she will advocate for Joseph and other individuals living with PWS – bringing both her voice and her heart to the cause.
“Being Joseph’s sister comes with both trials and blessings, but in the end, the blessings overpower the trials. Volunteering for PWSA has brought me joy because not only am I helping my brother and my mom, but I’m also helping other kids just like JoJo, and for that I am grateful.”
Through her volunteer work, Ella is helping ensure that newly diagnosed families feel seen, supported, and hopeful, proving that siblings can make a powerful impact in the PWS community.
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.