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.”
We look forward to how this new committee can help shape the work of PWSA | USA and help us reach and support all families living with PWS.
Please welcome, Tracy Chin.
Tracy Chin lives in Portland with her husband, 4-year-old daughter with Prader-Willi Syndrome, dog, and two cats.
She 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 a local hospital. 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 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 nursing students. She also presents on Navigating Complex Health Systems for Individuals with Disabilities for medical students. Tracy graduated with a BA in sociology and MS in nursing from UCLA.
What inspired you to join this committee?
I was honored to be asked to join because I know how important equity work is—not only for PWSA, but for the PWS community as a whole. I’m a huge proponent of improving systems and increasing access to historically marginalized groups, and I feel like this is one of the committee’s goals.
What do you think is one of the biggest challenges to equity in the PWS community?
One of the biggest challenges to equity in the PWS community is lack of representation from ALL groups, as we don’t know what barriers everyone is facing. Being able to do this would allow us to address and shed light on these barriers so we can hopefully make things more accessible for all.
What is one tangible thing you hope to achieve while on this committee?
I would love to be able to hear from individuals who are not plugged in with PWSA or other resources yet, as we could learn from their experiences and what we can do to increase access.
What kind of support do you need from the PWS community and/or this organization to do this work?
I hope we can create an environment where people stay curious and open minded about the work we’re trying to do. We want everyone in the PWS community to be able to benefit from this work.
Do you have a book, documentary, podcast, or other resources to recommend to families at home to learn more about equity?
I’ve loved this book about Judith Heumann: “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.”
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.