When I reflect on my connection and gratitude toward another person in relation to PWS, Cheri Wood comes to mind. As founding members of the Texas Prader-Willi Association about 12 years ago, we share a similar passion for the well being and future of those with PWS. I was (am) dumbfounded by the challenges this disorder presents. I’m blown away by how insanely time-consuming coping with the complexities of our disorder is, and by the costs. I’m profoundly concerned for the effect on siblings, the lack of social opportunities, poor representation in the legislature, and, most importantly for me, as an older parent, what will happen to my child when I am gone?
Cheri and I worked together on many issues, but a driving force for us was having a camp specifically for those with PWS. One day, 10 years ago, Cheri called me and the conversation went something like this, ‘I found a camp that’ll have us, but it’ll cost money and we have to provide our own nurse.’ I said, ‘I can raise money, (our annual golf tournament), and I’m a nurse.’ That August, TXPWA held our first People With Smiles Camp. It’s been a phenomenal success every year since. We were geared up to have our 10th Anniversary blow out camp celebration this year, but like so many other events and activities, it has been postponed due to Covid-19. With so many precious, disappointed campers we’ve decided to hold our camp dance anyway – virtually – on November 14th.
To say I am grateful for the determination and tenacity Cheri Wood has granted to the Prader-Willi community would be an understatement. With passionate allies on our side, hope for the future has never been brighter.
It is with this spirit of thankfulness, connection, gratitude, and hope for a brighter future that I challenge you to also look on the bright side and share your story as part of our #GratitudeChallenge to the PWS community. Simply share a photo of someone in the PWS community for whom you are grateful, and tag 5 others to do the same. Together, the PWS community has already achieved so much, and together, we will continue to achieve so much more.
June Finnerty
Mom to Joseph with PWS
President, Texas Prader-Willi Association
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.