Contributed by Karin Sweeney
As a military family we introduced Klara (14 with PWS) to running very early on, seeing as her active-duty dad had to run almost every day for 21 years. She hopped and skipped her way through a color 5k race for the first time at 5 years old, but her true love for running was found last year when I (her mama) joined a local running group.
Our run group fell in love with her (I mean how could they not lol) and even recruited her for their race team. Since then, she has improved in 5k races so much that she keeps placing in her age group against “typical” peers and has also started to run further distances.
She met Chris Nikic this February, the only man with Down Syndrome to have completed the Iron Man. Since meeting Chris and his amazing family, she raced a 10k and won first place and a 200$ prize, in the neurodivergent category.
She didn’t stop there. She recently ran her first half marathon and enjoyed almost every mile of it. I am saying almost as 3 miles of the 13.1 where on the hot and super soft beach. Her feet got soaking wet and we were both forced to walk ; however, she still got 3rd place in her age group and was so very happy and proud of herself.
She also started competing in Duathlons this year and is currently working hard on improving her swimming so she can compete in sprint Triathlons next year. Most of these Distances are a 400-yard open water swim followed by a 12-mile bike ride and then a 5k run.
These endurance sports have been helping her in so many ways, but she has especially loved making friends, feeling strong and empowered, and being part of a group. If you are interested to learn more, I highly recommend reading Chris Nikic book, 1% Better, and follow Klara’s journey on Instagram at @klara_on_the_run
Share Your Spotlight on Hope:
There are many challenges with PWS, and much of our focus is towards mitigating the effects of these challenges. So, PWSA | USA has created a space to share the other stories. The wins, the smiles, the milestones. The moments that bring joy and hope, a relaxing of the shoulders, and a momentary reprieve from the struggles of PWS. We want to share your Spotlight on Hope! No hope is too small. Submit yours at Share Your Story – Prader-Willi Syndrome Association | USA
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.