This Thanksgiving, before anyone takes a step toward the dinner table, two Stapleton mothers are hoping families will walk and run in the first annual Harvesting Hope, the race they’ve developed to benefit Prader-Willi Syndrome (PWS), an underdiagnosed disease with far-reaching effects. The event, held November 26 at Central Park, will include a timed 5K, a kids’ 1K fun run/walk (free for kids under 10), face painting, balloon art, a DJ and other family-friendly activities. One hundred percent of the proceeds will go to raise awareness and research dollars to find treatments for PWS.
Race Director Rachael Fischer’s 4-year-old son, Jude, and Assistant Director and Sponsorship Chair Julie Foge’s 14-month-old daughter, Eliza, have PWS. The genetic disorder starts at birth with low growth rates, low muscle tone, developmental delays and sometimes the need for a feeding tube. Children then start to thrive but begin showing extreme interest in food. Between 3–8 years old, the children begin to lose their sense of being satiated, never feeling full. They are constantly in search of food. Locks have to be put on refrigerators, cabinets, trash cans and even windows because kids will attempt to run away to find food. Children with PWS are at risk for childhood obesity and its associated conditions such as heart failure and diabetes. If not monitored, they can literally eat until their stomachs rupture, causing death.
A clinical manifestation of PWS can also develop in people who have had damage to the hypothalamus from seizures or brain trauma. There is no cure for PWS but early intervention is key. PWS sufferers have to be monitored throughout their lives. Treatment includes nightly injections of growth hormones and speech, occupational and physical therapies.
Because it is a multi-system issue, PWS sufferers often have overlapping symptoms with other conditions including autism and childhood obesity. “Therefore, research efforts advancing treatments for PWS have also been helpful in treating other diseases (endocrine issues, hypothalamic dysfunction, autism, speech disorders, obesity, etc.).”
The concept of creating a fundraising race started when Fischer, an avid runner, wanted to create a Thanksgiving Day community event in Stapleton. Fischer and Foge began working together on the race after being introduced by their pediatrician. The women, who became fast friends, were both shocked to find another Prader-Willi family in the neighborhood.
Holding the race on Thanksgiving Day is intentional. “It’s a holiday where we give thanks and we feast,” says Foge. “It’s also about promoting a healthy lifestyle, getting together as a community and a family, which is wonderful, but it also detracts a little bit from the focus on food that day.”
“We’re parents like everyone else and our goal is to help our kids reach their full potential like everyone else,” says Fischer. “These kids can go on to do wonderful things, but without a treatment for this hunger, they can never be on their own.
We think this race is one way that, even if it’s just a holiday and even if it’s just one race out of the year where we can do something that’s not around the table, we’ll do it. But hopefully it leads to something bigger.”
For more information, contact www.harvestinghope5k.com/.