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, Dini Rao.
Dini Rao is an Undoing Racism community organizer, PWSA USA board member, special needs advocate and wine entrepreneur. She has served on multiple boards and councils, advising on business strategies and equity plans. Dini has been hosting wine tastings for nearly 30 years. She inspected and sold rare auction wines at Christie’s, helped start Amazon’s wine department and tech startup Lot18 and poured as a sommelier. 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.
What inspired you to join this committee?
I started this committee because I believe we need a dedicated effort to make progress for overlooked families, so that no group is the last diagnosed or treated. In 50 yrs of existence, PWSA | USA has made incredible strides in diagnosis, treatments and best practices, but sadly these aren’t reaching everyone. Without targeted efforts, things won’t change. I gathered folks with experience in designing various programs from education support to clinical trials and healthcare that can reach everyone, especially the most underrepresented people. I also have the confidence from my past experiences to know that with effort we can make a huge difference for many families who don’t yet have a diagnosis, access to treatments or a community to support them. Knowing that is possible gives me hope and fuel to make this committee a success.
What do you think is one of the biggest challenges to equity in the PWS community?
One of the biggest challenges I’ve faced so far is people creating obstacles to progress because of their fears for what equity means. They are afraid they will get less or maybe they are just afraid of things being different. What they forget is that the rising tide lifts all boats.
What is one tangible thing you hope to achieve while on this committee?
I hope that all families facing PWS will feel a sense of belonging and empowerment. To do that I think one tangible first step is to expand our New Diagnoses program to be more culturally competent to the needs of all types of families.
What kind of support do you need from the PWS community and/or this organization to do this work?
For those who don’t understand the work, take the time to listen or read and build your empathy for those who have different lives than yours. Just because someone else struggles more or differently, it doesn’t take away from your challenges. For those who do see the importance of this work, speak up. Don’t assume that everyone wants to help or knows how. If you hear someone undermining this work, do something about it or seek help. Continue to learn and be in the practice of building your awareness. Listen with an open heart and be willing to challenge your assumptions. And when you find yourself in rooms of power or privilege, ask yourself: who is missing?
Do you have a book, documentary, podcast, or other resources to recommend to families at home to learn more about equity?
Many! For people of European descent (white), I highly recommend the podcast “Seeing White.” Seeing White – Scene on Radio
For people of color, I recommend “My Grandmother’s Hands: Racialized Trauma and the Pathway to Mending Our Hearts and Bodies.”
Right now I am reading, “Legacy: A Black Physician Reckons with Racism in Medicine” to understand the history and context for the problem we face in healthcare overall as well as listening to this podcast on healthcare equity for the LGBTQIA+ community: ‘If you’re not counted, you don’t count’: what can be done to tackle LGBTQ+ health inequalities? | The King’s Fund
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.