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Mountains of hope

PHOTO COURTESY OF AMY RUHF  Athletic trainer Amy Ruhf trains for her 250-mile hike on the Appalachian Trail in Pennsylvania.

Hike4Hope raises awareness of a rare children’s disorder

By Jack Firneno
Wire Editor

On June 20, Amy Ruhf will hike 250 miles on the Appalachian Trail in Pennsylvania. The number of miles is significant: one for every child in the world diagnosed with progeria, a disorder that causes children to age prematurely and have shortened life spans.

Ruhf, an athletic trainer at Lower Moreland High School, named the trek Hike4Hope and is using it to gather donations for the Progeria Research Foundation. The organization is the only one dedicated solely to the disorder.

“I hope to make people aware and invested in finding a cure,” she said. “Most people don’t know about it.”

Ruhf herself learned about progeria through Nathan and Bennett Falcone. They’re two elementary school-aged brothers with progeria whose family attends her church.

“We had a women’s retreat this fall, and I was on it with the boys’ mother,” she recalled. “We’d seen each other over the years, but never connected.”

That same weekend, another woman spoke about the family and the disease. The life expectancy of both boys, Ruhf learned, was only 14 years each.

“It really made us all think about what we could be doing to help them,” she said. “It’s heartbreaking.They’re normal kids. They like to play and they’re full of energy, bouncing off the walls. But they just have this condition that gives them limitations.”

As Ruhf got to know the family better, she searched for a way to help them. The idea for a charity hike, she said, came out of nowhere.

“I was sitting in my office thinking about how I could raise funds and awareness and it just popped into my head,” she said.

Amy Ruhf (crouching) poses with (from left) Libby, Bennett and Nathan Falcone. Nathan and Bennett suffer from progeria, a rare disorder that causes children to age prematurely and have shortened lifespans.

It’s not the first time Ruhf has been involved with charity efforts — she’s done fundraising walks and famines in college and high school, respectively — but this is easily her biggest undertaking.

Despite never hiking for more than a few hours at a stretch, Ruhf settled on the Pennsylvania portion of the 2,000-mile Appalachian Trail. It’s a notoriously difficult passage, filled with “large, boot-breaking, ankle-twisting” rocks, noted Ruhf.

“I go out on a trail every weekend and I’ll do six or seven miles Saturday, eight or nine on Sunday. I’m trying to get a pretty good profile of the terrain and train myself,” she said.

Ruhf goes out alone sometimes, or invites friends for day trips. “It’s nice to be out in the woods alone or with a couple of friends, pulling back from the business of normal life,” she noted.

But it’s not just Ruhf and her friends who like the idea. She’s almost reached her goal of raising $5,000, and with a month until the hike, she’s now aiming for $25,000.

“I’m pleased I hit my original goal, but I feel like I barely hit the tip of the iceberg,” she said.

Most donations so far came from friends, family and fellow parishioners of Ruhf and the Falcones, but she’s also heard from people who don’t know them at all. “I thought it was really neat. My goal was to increase awareness,” said Ruhf. “The fact that I had some complete strangers donating sizable amounts of money, I’m kind of accomplishing that goal.”

For information or to donate, visit www.hike4hope1.blogspot.com.

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