In an effort to move forward into a more equitable community, where all families with PWS are effectively represented and have access to the necessary resources for this PWS journey, regardless of race, ethnicity, geography, gender identity, sexual preferences, language, disability, or socioeconomic status, PWSA | USA is honored to introduce our Equity Committee.
As stated in the Equity Committee Charter, the purpose of this committee is to, “advance equity, inclusion, and justice across the organization’s governance, advocacy, research, programs, family support, and community engagement. The Committee works to identify and dismantle systemic barriers that contribute to diagnostic delays, unequal access to care, underrepresentation in research and clinical trials, and disparate health outcomes for marginalized communities affected by Prader-Willi syndrome.”
As we look forward to how this new committee can help shape the work we do as an organization and help us reach and support all families living with PWS, we’re excited to introduce you to the committee members.
Please welcome, Ashish Rishi.
Ashish Rishi lives in the UK and is the founder and CEO of Unwritten Health and a member of the Scientific Advisory Board for IHI READI, a Horizon Europe initiative on health equity and research infrastructure. His career has been dedicated to making healthcare more inclusive, not as a moral cause, but as a practical necessity. Because systems that exclude people from their data don’t just fail those people. They fail everyone who relies on the decisions that data shapes.
His work starts with a question most systems never ask: who isn’t in the data? Ashish has spent his career examining how healthcare decisions break, not at the point of failure, but long before it. When the wrong voices shape the evidence. When engagement looks thorough but isn’t. At Unwritten Health, he’s building something to change that, turning diverse lived experience into decision-ready data that helps life sciences see not just what happened, but where understanding eroded and trust was lost long before outcomes told the story. He doesn’t frame this as advocacy. He frames it as an evidence problem. A design problem. One with real consequences for research, innovation, policy, and care delivery. Based in Manchester, UK, Ashish works with healthcare and life sciences organisations who are beginning to ask whether their data truly reflects who it needs to, and what it costs when it doesn’t.
What inspired you to join this committee?
The hard work the PWSA members put into improving the state of care for people living with PWS was inspiring and led me to want to be involved.
What do you think is one of the biggest challenges to equity in the PWS community?
The biggest challenge is the need for consistent, timely access to appropriate care and treatments across different geographies, health systems, and sociodemographic groups.
What is one tangible thing you hope to achieve while on this committee?
One tangible thing I’d hope to achieve is a concrete, co-designed plan to reduce access gaps to specialised PWS care and emerging treatments for historically under-served groups (e.g. BIPOC families, lower-income, and non‑urban communities).
What kind of support do you need from the PWS community and/or this organization to do this work?
To do this equity work well, I’d need three core things from the PWS community and the organisation: ongoing, structured input from diverse families (especially those currently under‑served); access to data, existing initiatives, and practical implementation channels so we can turn insights into concrete pilots and changes; and a clear organisational mandate with some resourcing and psychological safety, so the committee is empowered to ask hard questions about inequity and actually act on the answers.
Do you have a book, documentary, podcast, or other resources to recommend to families at home to learn more about equity?
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.