When I reflect onย myย 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 theย well beingย and future of those with PWS. I was (am) dumbfounded by the challenges this disorder presents. Iโmย blown awayย byย how insanelyย time-consumingย coping with the complexitiesย of our disorderย is,ย and by theย costs. Iโm profoundlyย concernedย forย theย effectย on siblings,ย 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?ย
Cheri and I worked together onย many issues, but a driving force for us was having a camp specifically for those with PWS.ย ย One day,ย 10 years ago,ย Cheri calledย meย andย the conversation went something like this,ย โI found a camp thatโll have us, but itโll cost money and we have to provide our own nurse.โย I said, โI can raise money, (our annual golf tournament), and Iโm a nurse.โ That August,ย TXPWAย held our firstย Peopleย Withย Smiles Camp. Itโs been a phenomenal successย every year since. We were geared up to have our 10thย 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 weโve decided to hold our camp dance anywayย โย virtuallyย โย on November 14th.ย ย
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.ย
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.ย
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 variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย 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 Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs 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 Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.