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'Live life full': Turkey day racing for research for rare genetic disorder

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Posted at 3:38 PM, Nov 25, 2021
and last updated 2021-11-25 20:54:46-05

DENVER — Thanksgiving Day is one of the most popular days of the entire year for road races. The Harvesting Hope 5k didn’t choose to hold their race on turkey day because of the popularity, but because of the day’s connection to food.

“It seems on a holiday where most of us will be uncomfortably full from this huge meal that we will enjoy, people with Prader Willi Syndrome literally live their lives never feeling full. And not just not feeling full; they feel hunger that is three times more intense than most of us feel hunger,” race director Rachael Fischer said.

Prader Willi is a rare genetic disorder with a hallmark symptom of hyperphagia, which is that intense and unyielding hunger.

“It’s an all over lifestyle,” Joanne Strickland said, describing how PWS has impacted her young daughter Julia.

The Strickland family came to the Harvesting Hope race to raise awareness, but also to give Julia something fun to do on a day centered around a feast that she can’t take part in.

“It’s perfect because it takes the focus off of food,” her mom said.

The race also raised money for research into treatment for PWS, and specifically, hyperphagia.

“I think we have about six things in clinical trial and one has been promising, so we feel like we’re getting close,” Fischer said. “So that one day our kids or kids with PWS can live life full.”

Joanne Strickland talked about what that would mean for her daughter.

“If they get the research to calm her brain down and get it to listen to her body that ‘I am full,’ she could do so much more in life,” she said. “I mean, that would be everything.”

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