FOR IMMEDIATE RELEASE
Contact: Paige Rivard, CEO
Prader-Willi Syndrome Association USA (PWSA | USA)
privard@pwsausa.org / 941-487-6724
Prader-Willi Syndrome Association | USA Expands Capacity to Serve With
Transition of the Prader-Willi Care Coordination Program from The Children’s Institute of Pittsburgh
(May 19, 2021- Sarasota, FL) PWSA | USA, a national nonprofit organization with a mission to enhance the quality of life and empower those affected by Prader-Willi Syndrome, announced Wednesday that the PWS-related services of The Children’s Institute of Pittsburgh will transition to their auspices, effective May 31, 2021. PWSA has provided similar services since 1975 on a national scale.
“We are excited to enhance our offerings to schools, families, and the wider community with the transition of the Prader-Willi Care Coordination Program at The Children’s Institute of Pittsburgh, “explained PWSA | USA CEO Paige Rivard. “The addition of this program to our Family Support Services will enable us to better serve the PWS community moving forward.”
A decline in the number of families served by the Prader-Willi program, coupled with PWSA | USA’s position as a highly regarded and solely focused national PWS provider led to the decision and transition plan approved by both organizations.
“PWSA | USA is a national nonprofit organization dedicated to supporting individuals diagnosed with Prader-Willi syndrome and their families,” expressed Wendy Pardee, President and CEO of The Children’s Institute of Pittsburgh. “As we evaluated these services, it was clear that PWSA is the most knowledgeable, well-respected, and compassionate organization to care for our families moving forward. We are confident that PWSA will provide each family with the long-term care, compassion, and expertise they expect and need.” The transition of this well-respected care coordination program is a natural evolution of PWSA | USA’s offerings and positions the organization for programmatic growth as the nation’s leading provider of family support and care coordination services for the Prader-Willi Community.
Former Pittsburgh Pirates manager (and incoming PWSA | USA board member) Clint Hurdle, an outspoken supporter of both organizations, shared his enthusiasm for the transition. “Families who have children diagnosed with Prader-Willi syndrome understand the fear and unknowns associated with navigating this complex condition,” Hurdle said. “Having a child with Prader-Willi syndrome has changed my family’s life in so many ways. I am grateful for organizations like The Children’s Institute and PWSA | USA and am confident that this transition will allow PWSA to expand their reach and mission.”
About PWS & PWSA | USA:
Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects all sexes with equal frequency and affect all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.
Prader‐Willi Syndrome Association | USA (PWSA | USA) was formed in 1975 to unite parents, professionals, and to enhance the quality of life of those affected by Prader‐Willi syndrome. PWSA | USA empowers the PWS community through shared experiences, research, education, advocacy, and support. With chapters in most states, ours is the only national PWS support organization whose sole purpose is to assist individuals with the syndrome, and their families, every step of the way. www.pwsausa.org PWSA | USA’s Mission: To enhance the quality of life and empower those affected by Prader-Willi Syndrome.
PWSA | USA (federal tax id 41-1306908) is a nonprofit corporation with federal tax-exempt status as a public charity under section 501 (c) (3).
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.