Equity Committee
Prader-Willi Syndrome touches every community.
Across races, ethnicities, languages, geographies, and identities. Yet not every family has experienced equal access to timely diagnosis, quality care, or a seat at the table where decisions are made.
The PWSA | USA Equity Committee exists to change that. By centering the voices and experiences of historically marginalized communities, this committee works to ensure that equity is not an afterthought, but a foundation.
Our Purpose
The Equity Committee advances 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.
It is also the Committee’s duty to ensure equity is embedded into decision-making, not treated as a standalone initiative.
Identify Barriers
Uncover and address systemic challenges that create inequities within diagnosis, care, research, and community access.
Improve Access
Expand timely diagnosis, quality healthcare, educational support, and resources for all families affected by PWS.
Increase Representation
Elevate historically marginalized voices in leadership, research participation, advocacy, and decision-making spaces.
Build Equitable Systems
Embed equity into organizational policies, programs, partnerships, and long-term community initiatives.
What is Equity?
Equity means ensuring that individuals and communities affected by Prader-Willi syndrome — particularly those historically and structurally marginalized — have fair and just access to timely diagnosis, quality care, research participation, education, resources, leadership, and decision-making opportunities.
Equity recognizes that different communities face unique barriers and therefore requires tailored approaches, redistribution of resources, and the removal of systemic obstacles so that outcomes are not predictable by race, ethnicity, geography, gender identity, sexual orientation, language, disability, or socioeconomic status.
Access
Inclusion
Representation
Justice
Community
Opportunity
Committee Members
Meet the individuals helping guide the Equity Committee’s mission to build a more inclusive, representative, and equitable future for all families affected by Prader-Willi syndrome.
Dini Rao | Committee Chair
Dini Rao is an Undoing Racism community organizer, board member, special needs advocate and wine entrepreneur. She has served on multiple boards, advising on business strategies and equity plans. As a parent to two kids, Ayoni with Prader Willi Syndrome, Dini spends much of her time caregiving and advocating. Seeing a gap in health outcomes for people living with PWS, she created a taskforce to work with stakeholders on creating better equity and co-founded an affinity group for people of color called Colors of Hope. She aims to use her hosting and organizing skills along with her Harvard MBA to create more justice and joy in the world.
Ashish Rishi | Advisor role, non-voting
Ashish Rishi is the Founder of Unwritten Health, a health-equity data and insights company focused on translating lived experience into decision-ready strategy for healthcare, life sciences, and nonprofit organisations. His work centres on identifying structural gaps in diagnosis, access, and research participation, and supporting leadership teams to embed equity within governance and implementation frameworks.
Ashish previously founded and led COUCH Health, a global patient engagement agency working with pharmaceutical and research partners to improve inclusion in clinical trials and healthcare programmes.
He serves as a peer reviewer for the Journal of Patient Experience and sits on the Board of IHI-READI, Europe’s largest consortium advancing diversity and inclusion in clinical research across industry, academia, and patient organisations.
Ashish brings a systems lens to equity governance, helping boards move from intention to structured, accountable action.
Wordna Meskheniten
Wordna Meskheniten is a Change Management Strategist and Leadership Coach with twenty years of experience leading in the education and nonprofit fields. She has expertise in equity and inclusion, change management, leadership development, executive coaching, and organizational culture.
Through leading dynamic professional learning experiences and customized leadership advising, Wordna helps leaders and teams effectively initiate and navigate change. She has supported several organizations through equity facilitation, strategic planning, project management, and program advising. She counsels out of a dedication to continuous improvement and ensuring that leaders and organizations can fulfill their missions with excellence and equity.
She formerly served as the Vice President of People & Culture with The Wilderness Society where she led the Equity, Culture & Learning and Human Resources teams. She also led district-wide professional development as Manager, Equity with DC Public Schools and organized women as volunteer leaders within the public health organization, GirlTrek, as their National Field Director. Wordna earned her B.A. in History from Harvard University and an M.A. in Change Leadership from Columbia University. She and her family reside in Washington, DC.
Tracy Chin
Tracy Chin is a registered nurse working in transitional care at Oregon Health and Science University (OHSU). Prior to her becoming an RN, she worked and interned at various nonprofits addressing cancer research, houselessness, and LGBTQIA+ rights. During this time, she decided to go back to school to become an RN. Upon graduating, she worked in critical care, but ultimately decided to return to the nonprofit world and began working as an RN at a homeless shelter.
This catapulted her into various roles working at a Medicaid organization, primary care clinic, emergency homeless shelter, County COVID RN navigator, and now as a transitional care RN at OHSU. In doing so, Tracy helps medically, and psychosocially complex patients transition back into the community. Throughout all of these positions, Tracy passionately advocates for the deeply marginalized and most vulnerable populations. She employs trauma informed care along with harm reduction approaches in her work and feels strongly about equity in all its forms.
In addition to her work as a transitional care RN, Tracy facilitates shadowing opportunities for OHSU medical students to learn about this important work being done in the community. She regularly presents on Social Drivers of Health and Health Equity to OHSU nursing students. She is also going on her second year of presenting and proctoring an intersession on Disabilities for OHSU medical students.
Tracy graduated with a BA in sociology from UCLA and went on to obtain her MS in nursing from UCLA. She has a young daughter with Prader-Willi Syndrome, a husband, dog, and two cats. She currently resides in Portland, OR and loves anything that has to do with animals, joy, live music, tea, and good food.
Dhivya Venkataraman
Dhivya Venkataraman has more than 20 years of experience supporting education nonprofits and public-sector organizations, with a career focused on helping organizations strengthen their impact and better serve communities. Her approach to capacity building is grounded in equity, centering the experiences of marginalized communities and ensuring diverse perspectives inform decisions and strategy. She believes this kind of intentional work is essential to creating lasting, meaningful change.
Dhivya has worked with community-based organizations, school systems, nonprofits, and philanthropies across the education sector. She is currently an independent advisor, supporting social impact organizations with strategic planning and capacity-building work. She is presently supporting a state education agency in developing strategies to improve outcomes and experiences for learners with disabilities and their families. Prior to her current role, she worked at Charles and Lynn Schusterman Family Philanthropies, where she managed grants in the education portfolio and led efforts to support grantees in building stronger systems and practices. Earlier in her career, she was an Associate Partner at Bellwether Education Partners, advising education organizations on strategy, talent, and change management. Dhivya holds master’s degrees in Public Policy and Business Administration from Georgetown University and a bachelor’s degree in Business Administration from The George Washington University. She also serves as Vice President of the Board of City Kids Wilderness Project.
Dr. Leon Caldwell
Dr. Leon D. Caldwell is a nationally recognized public health and health equity leader with more than 25 years of experience in intervention science, behavioral health, community mental health, public health strategy, and systems transformation. His work has focused on advancing equitable approaches to health, wellness, prevention, and community-centered solutions for historically underserved populations. Dr. Caldwell has led national initiatives in health equity, equity focused learning, measurement, evaluation and strategy, and community engagement across healthcare, philanthropy, and nonprofit sectors.
Dr. Caldwell also brings lived experience to his advocacy and leadership within the Prader- Willi syndrome community. He is the father of a 22-year-old son, Kahlil, who has Prader-Willi syndrome. He previously served on the Board of Directors of the Prader-Willi Syndrome Association USA (PWSA USA) and is believed to have been among the organization’s first board members of color. His involvement reflects a long-standing commitment to advancing inclusion, equity, family support, and broader representation within the PWS community, especially fathers’ perspective.
Through both his professional expertise and personal experience as a parent, Dr. Caldwell brings a unique perspective to conversations about equity, access, systems of care, and improving quality of life for individuals and families impacted by Prader-Willi syndrome. Leon lives in Laurel, Howard County MD.
Stacy Ward | PWSA USA CEO, BCBA, MS
Stacy Ward, a longtime leader in the PWS community, has a background rich in non-profit, behavioral health, education advocacy and held multiple successful leadership roles. With 30 years of experience working with individuals with ID/DD and 20 years working with individuals diagnosed with PWS, Stacy brings a variety of skills to the role of CEO of PWSA | USA. Prior to her appointment as CEO with PWSA | USA, Stacy was the Director Family Support.
As Director of Family Support, she expanded upon existing and developed new educational and support programs for individuals with PWS, their families and caregivers increasing Family Support actions by 106%. Prior to that, Stacy spent over 12 years working for Catholic Charities Disabilities Services in Albany, NY where she focused on overseeing both the residential and clinical departments. Stacy earned a bachelor’s degree in psychology and human services from Russell Sage College and her master’s degree in applied behavior analysis from Kaplan University. She possesses a special education advocacy certification from the William and Mary College of Law Pele Clinic and is a member of the Council of Parent Attorneys and Advocates (COPAA) and currently resides in Troy, NY.
Podcast Episodes
Listen to important conversations exploring equity, inclusion, representation, and community experiences within the PWS landscape.
Welcoming PWSA | USA’s Equity Committee
More Resources
Every two years, individuals living with Prader-Willi syndrome (PWS), their family members, and supporters do something remarkable. They pack their bags, book
March is Developmental Disabilities Awareness Month! Developmental disabilities are conditions that begin at birth or in childhood and may affect physical development,
Contributed by Anne Fricke, mom to Freya (14, living with PWS) I remember when I really began to grasp the concept of
Visit Our Webpage
Learn more about the work being done to uplift and support historically marginalized communities within the PWS community by visiting Colors of Hope.

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.