July 12, 2023 – The Prader-Willi Syndrome Association | USA (PWSA | USA) announces the resignation of its CEO, Paige Rivard, MBA. Paige held the CEO position for the past three years and has led many efforts to advance awareness, research opportunities, and provide support for families in the Prader-Willi syndrome (PWS) community. The association extends its heartfelt appreciation to Paige for her leadership and dedication during her tenure.
“In the three years since Paige assumed the leadership of PWSA | USA, the organization has made a lot of progress on all fronts due in large part to her dedication and vision. Paige’s experience as a business leader and as a mother of a child with PWS were of great value to PWSA | USA. Her leadership has been instrumental in shaping the association into the respected and vital resource it is today. We wish Paige the very best in her next endeavor,” said Board Chair Marguerite Rupnow, MBA.
“It has been an absolute pleasure to serve the PWS community and PWSA | USA as the CEO for the past three years.
The organization has grown exponentially in all three of our pillars over these last three years, and a great foundation has been built to continue the important momentum. I would like to thank the staff, Board of Directors, and our community for their commitment to improving the lives of our loved ones living with PWS.
While this decision was not an easy one, I am proud of everyone involved over the last three years, and I look forward to staying involved in other ways within the community and spending some quality time with my family! Remember, together we are United in Hope,” said Paige Rivard.
PWSA | USA will commence a search for a new CEO. In the meantime, Stacy Ward, MS will serve as the Interim CEO, effective immediately. Stacy, who joined the team in August 2016 and has held the position of Family Support Director since December 2017, brings a wealth of experience and a deep commitment to the mission of the association. Her proven track record and passion for supporting individuals with PWS make her an excellent choice to lead the organization during this transitional period.
As the Interim CEO, Stacy will oversee the strategic direction and day-to-day operations of PWSA | USA, working closely with the dedicated staff, volunteers, and board of directors. She is committed to building upon the organization's rich legacy and further advancing its mission to improve the lives of those impacted by Prader-Willi syndrome.
"I am truly honored to step into the role of Interim CEO at PWSA | USA," said Stacy Ward. "PWS is a complex disorder that affects individuals and families in profound ways. I am dedicated to collaborating with the PWSA | USA community to continue to drive positive change, increase awareness, and provide critical resources to empower individuals with PWS to lead fulfilling lives."
Under Stacy’s guidance as the Interim CEO of PWSA | USA, the organization looks forward to continuing its vital work, expanding its reach, and providing essential support to individuals with PWS and their families.
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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.