Prader-Willi Walk becomes beacon of hope for struggling families
What began as a hurried effort to bolster the spirits of a few family members has planted hope in the hearts of dozens of people who love someone with the low-profile but serious Prader-Willi syndrome.
Four years ago, the Prader-Willi Walk drew around 100 people to Hillsboro High School and raised $10,000 for the Prader-Willi Syndrome Association, which helps fund research and support families of those struggling with the genetic disorder.
This year, on July 29, the fundraiser blew past its goal of $25,000. More than 239 people showed up — those were only the ones who signed in — and helped bring in $30,000, the eighth-largest PWS fundraiser in the world, according to the fundraising website onesmallstep.com.
People with Prader-Willi syndrome feel hungry all the time — and not just hungry, but starving.
It's caused by a genetic mutation, although it's unclear what sparks the mutation. The syndrome amplifies a person's appetite and as a result, can also affect growth, metabolism, cognitive abilities and behavior, according to the Prader-Willi Syndrome Association, which estimates one in every 12,000 to 15,000 people has PWS.
There is no cure for the syndrome but it can be managed — the earlier the better — through growth hormone treatment to increase muscle mass and height and decrease body fat. But the symptoms are difficult to treat, according to the Foundation for Prader-Willi Research.
One of the Hillsboro Prader-Willi Walk organizers, Diane Schantin, said many kids have to be continually supervised to keep them from eating a dangerous amount of food.
Her 8-year-old grandson, Austin, lives with Prader-Willi Syndrome and was the spark behind the first walk.
"We had just one family with PWS, but we added two more families that heard about the walk," Schantin said. "The next year was five families and last year we had 12 families represented. It's really cool."
The fundraiser included a raffle, garnering donations from Top Golf, Pumpkin Ridge and the Oregon Golf Club. Someone donated a weekend at their house on the Oregon Coast. The walk wound through the parking lot at Hillsboro High School before looping around the nearby neighborhood. Many who couldn't attend bought a raffle ticket.
The event has become more than a fundraiser, morphing into a meeting place and a foundation for a cohesive PWS community.
"The very first year, my son-in-law and daughter were just overwhelmed by the support and the people who showed up," Schantin said. "People don't understand it. But each year we have new families, and people come up to me and my youngest daughter … and say, 'It's different than we thought it would be. We'll be back next year and bring more people. It's so awesome to see other families and see our kids will be okay."
A 38-year-old and a 25-year-old living with PWS attended this year's fundraiser, as did one mom whose 7-month-old baby is just beginning the PWS journey. Part of the event was a get-together for the families the night before the walk, opening up a door to support one another.
"It really gives families hope to look around and see a community connection," Schantin said.