Meet our advocate, Kayla Day, mom to Luella, age 4 with PWS.
Contributed by Kayla Day
After having my daughter and receiving a late diagnosis of Prader-Willi syndrome, it took years before I could discuss it with others. In these 4 1/2 years, I have met amazing families and staff through PWSA | USA. The love and support they gave our family was overwhelming.
Dealing with physicians and local hospitals lacking knowledge about her condition made things much more difficult when we were starting out. In the last two years, I have been doing my best to advocate for Luella and the PWS community. It is crucial to educate the public and the medical field about such a rare, complex disease to ensure proper care.
Recently, I have been working on the steps to have PWS recognized as a developmental disability in Pennsylvania. In early January, I met with Senator Pat Stefano to find out my next steps in this process. We discussed Prader-Willi syndrome in great detail and the struggles that we, as a community, face daily to receive proper resources for our loved ones with PWS.
“It was great to meet with Kayla and learn more about Prader-Willi Syndrome. I look forward to finding ways to further advocate for those affected by the disease, ensuring that their needs are met and that others will be educated about this disease, especially those in the medical field,” said Senator Pat Stefano.
Senator Stefano was very helpful in giving me the proper information and contacts to continue my advocacy mission. It is crucial for me to continue pushing these topics where it matters. True advocacy and knowledge of PWS would not only change my daughter’s life but also advance the importance of treatment options in the near future. These treatments could save lives, and I will do everything in my power to continue making a difference in our state to get us there faster. I am truly grateful for this opportunity to make a difference in Pennsylvania. PWS is rare, but hope is not.
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.