In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce a collaborative initiative aimed at improving the standard of care and support for marginalized individuals living with PWS and their families.
This initiative, undertaken with the active involvement of several community members, seeks to ensure that every person living with PWS, regardless of their background, can access better care and harbor hope for the future. As an initial measure, the community members established a BIPOC (Black, Indigenous, and People of Color) affinity group. This group is dedicated to people of color living with PWS and their caregivers, providing a platform to share experiences, offer mutual support, and develop necessary resources.
We urge all PWS service providers to assist in spreading the word about this vital initiative to families of color within the PWS community. Your support is crucial in reaching those who will benefit most from these efforts. For any questions or further information, please contact the BIPOC organizer group – Charles Conway, Karine Kabundi, and Dini Rao – at bipocpws@gmail.com.
Together, we can make strides towards a more inclusive and equitable future for everyone affected by PWS.
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.