Saturday’s walk/run fundraiser honored one girl, remembered another
The “Pacesetters” were out in full force Saturday morning, September 26, taking many steps to raise monies for “Pace Yourself for PWS” and “One Small Step.”
In honor of Kendall Marcy – and in remembrance of Kelsey Hulzebos – the fundraising walk/run for Prader-Willi Syndrome (PWS) research was held at Lawcon Park in Mountain Lake. The cost of participation for the walk/run along the pathways of the Mountain Lake Trail was free – but a free will donation was collected towards “One Small Step” research on PWS. Both adults and children participated.
This fundraiser was organized and sponsored by Jessica Blom, Jaque Niss-Radtke, Jada Hampel and JennaLee Marcy.
As JennaLee notes about the event, ongoing research and her daughter, “This is an exciting time for PWS research as they have made several breakthroughs in understanding it’s complexities. We are ready to start making a difference towards finding treatments for our ‘peanut” – and all the others suffering from the complications of PWS. Please help her have the ability to dream of a future – without limitations.”
One hundred percent of all of the fundraising will go directly towards the Foundation for Prader-Willi Syndrome Research. “This fundraising will help support PWS research, Kendall – any other infants that receive this diagnosis – and their families,” attests JennaLee.
In addition, there was plenty of popcorn and sack lunches to go around, as well as children’s games.
Sponsors included Country Pride True Value, United Prairie Bank, Our Hometown Cafe, Jordana’s, Cenex, Midway Farm Equipment Inc., Milk Specialties, Mountain Lake Fire Department and Balzer Inc.
About PWS
PWS is the most common known genetic cause of life-threatening obesity in children. It sporadically occurs in 1-in-15,000 births. People with PWS never experience feeling full, so they constantly want to eat.
Typical characteristics of PWS include low muscle tone, developmental delays and short stature (if not treated with growth hormone). They also have many complex and unique medical issues.
The symptoms of PWS are believed to be due to dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including regulating hunger and satiety, body temperature, pain, sleep-wake balance, fluid balance, emotions, and fertility. Although this hypothalamic dysfunction is thought to lead to the symptoms of PWS, it is not yet clear how the genetic abnormality causes hypothalamic dysfunction.
Honored
Kendall Marcy – the newest addition to the Clint and JennaLee Marcy family – born on February 16, 2015. She is an adorable bundle of sweetness and love. She also has PWS. There is no cure for PWS. Kendall will never outgrow it – and will never be able to live on her own, unless a “cure” is found for her ever-present hunger
Kendall already has faced many challenges in her young life – and unfortunately will face many more..
Remembered
Dennis and Reva Hulzebos, also of Mountain Lake, faced the same challenges when their daughter and youngest child, Kelsey was born with PWS in 1986.
Kelsey was able to achieve her goal of graduating from Mountain Lake Public High School in 2005, but the many complex and unique medical issues connected with PWS took her life on November 3, 2008 at the age of 22.
Network of support
The walk and run demonstrated a network of support for Kendall and the memory Kelsey. It included families, friends – and a community – all linked together on a pacesetting path of action towards progressive PWS breakthroughs.
+ For another post on Kendall, Kelsey and PWS, check out the link: http://www.cross-countiesconnect.com/2015/09/pacesetting-pws/
Below are some photos from the walk/run fundraiser:
