Help Fight Prader-Willi Syndrome With This Saturday’s Halloween 13K in Endicott
Ellie Johnson was diagnosed with Prader-Willi Syndrome, or PWS at age 2 in 2009. PWS is a rare genetic disorder that is due to a abnormality in the 15th chromosome, that causes an excessive preoccupation with food, which can cause obesity-related health problems. Hypotonia (sometimes called “floppy baby syndrome”), small stature, cognitive delays, and other developmental disabilities are also associated with PWS. As with many rare disorders, information and funding for research can be in short supply, which is why Ellie’s family created Team HopeFull, and is having this Saturday’s Halloweed 13K in Endicott, to raise money for PWS research, support and to fund grants for families living with PWS.
The 8-mile race starts at 8AM at the Endicott Visitor’s Center, and ends in the U.E. District Offices parking lot. There are two races, a full 13K, and 13K two-person relay. Racers are encouraged to race in costumes that are safe to run in, and not offensive to others. There are awards for Best Male Costume, Best Female Costume, Best Team/Group Costume. Register online by Thursday, you may also register on Friday October 26th at Packet Pick Up at Johnson City High School or on Race Day starting at 7am.
According to Ellie’s family on their website:
“Every day Shawn and I wake up relieved that so far Ellie is not experiencing this insatiable hunger, but we know it may start any day. Ellie has already faced many challenges as a result of PWS. She had a difficult time feeding for the first 3 months of her life. She rarely cried or was even awake for prolonged periods of time. Ellie was a “floppy” baby due to her low muscle tone (hypotonia). This low muscle tone made it difficult for Ellie to learn to crawl, sit up, and walk. Ellie has also had to work harder than most to learn to talk and to acquire new skills that come naturally for most others. In her 4 short years, Ellie has learned a lot about hard work, perseverance and persistence. This persistence has served Ellie well. She learned to crawl at 14 months, walk at 17 months, and is starting Kindergarten in the Fall. She loves to dance and she amazes us all every day! These accomplishments have been a result of her persistence and many hours in physical, speech, occupational and hippo (horse back riding) therapy. Ellie has overcome a lot of challenges already yet some of the most difficult are yet to come.”