AT Plans Fundraising Hike to Benefit Research, Families Affected by Progeria Disease

 

AT Plans Fundraising Hike to Benefit Research, Families Affected by Progeria Disease

Although she’d never hiked a day in her life previously, the idea for a fundraising hike seemed to pop into her head naturally. Ruhf, MS, ATC, LAT, athletic trainer for Lower Moreland School District in Huntingdon Valley, Pa., attended a church retreat with Phyllis Falcone in October, whose two children were known to have progeria, a genetic disease that causes shortened lifespans and usually leads to strokes and heart attacks.

Starting June 20, Ruhf hopes to raise $25,000 for the Progeria Research Foundation by hiking 250 miles on the Appalachian Trail. Each mile represents one child who’s been diagnosed with the rare disease, which affects only 250 kids in the world. “I really believe we’re called upon to give back from the bounty we’re given,” Ruhf said. “These kids aren’t able to hike, but I am physically able to hike."

Ruhf said there’s currently no cure for progeria; and of the 16 located in the U.S., brothers Nathan, 8, and Bennett, 5, are two of them.
Aside from sore joints and ankle sprains, she hasn’t suffered any injuries, but did warn about “one of the notoriously rockiest sections on the Appalachian trail. “It’s been a challenge physically … and has been quite a learning experience over the past couple of months trying to figure out exactly how many miles I could do each day, not to mention gear.”

To train for such a strenuous endeavor, Ruhf has been spending nearly every weekend (“Fortunately, sports season is winding down here,” she said) on the trail, driving about 90 minutes to her destination and hiking for several hours before returning home. Budgeting about 27 days to complete the hike – which would end her journey around July 16, Ruhf said members of her local church are willing to drop off supply packages of food, clothing and other necessary items along the way. "When you’re on a climb and you get to the top there’s sometimes a nice view … but thinking of each step as one step closer to a cure is the most rewarding."

To visit Amy’s page or make a donation to her cause, visit http://www.hike4hope1.blogspot.com. More fundraising events and information on the Falcone brothers and the progeria disease is available at www.nathanandbennett.com.

Posted by NATA News Managing Editor Jaimie Siegle (jaimies@nata.org)

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