Tri-state bike trek for Lou Gehrig's Disease overnights at UConn
By Melanie Savage - Staff Writer
Storrs - posted Tue., Jul. 23, 2013
The afternoon of July 19, in the midst of the area’s fourth heat wave of the season, dozens of bike riders began to arrive at the grounds of the UConn School of Agriculture. As afternoon dwindled into evening, temperatures outside were still in the 90s. Bike riders took advantage of showers made available inside one of the campus buildings, dined beneath one of several large tents, and lounged in the shade on a large tarp stretched out over the grass.
It was the end of day one of the ALS Therapy Development Institute Tri-State Trek, and many bikers had already arrived on campus after a 104-mile ride; others continued to trickle in. The ride began at 6:15 a.m. in Newton, near Boston. Riders would spend the night in dorms on-campus, and take off again the next morning. In total, the ride covered 270 miles, encompassed three days, and passed briefly through New York, ending finally in Greenwich.
In its 11th year, the trek supports research aimed at ending ALS, also commonly referred to as Lou Gehrig’s disease. “We ride for people who no longer can,” said David Virden, race director. Virden’s dad was diagnosed with ALS in 2006. ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It is a fatal disease with no cure, most commonly resulting in death within two to five years, though many have been known to survive for much longer after diagnosis. “You slowly watch your loved one become a prisoner in his or her body,” said Virden.
“With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed,” according to the website for the ALS Association (www.alsa.org).
According to Virden, riders were motivated by a number of factors to participate in the event. Many have a personal connection to ALS. “The people who ride in this event are particularly dedicated to beating this disease,” he said. Many have been participating since the ride was founded 11 years ago. “In many ways we’re like a family,” said Virden. Even those with no personal connection find the ride challenging, according to Virden. Between the typical weather of the season and the terrain of the course, “It’s hard. It’s definitely a challenging ride,” he said.
A group of friends from New Orleans and Boston said that they'd been inspired by the story of former New Orleans Saints football player, Steve Gleason. Gleason was diagnosed with ALS in 2011. Despite the fact that he is now confined to a wheelchair and speaks via the use of a synthetic voice, he continues to live his life to the fullest and has founded an organization with a mission to “generate public awareness for ALS, raise funding to empower those with ALS to live a rewarding life, and ultimately find a cure,” according to the website, www.teamgleason.org. “He just completed a climb up Machu Picchu,” said New Orleans resident Grif Fos. “That’s pretty amazing.”
Gleason’s foundation recently opened The Team Gleason House for Innovative Living, a new residential facility designed to help people diagnosed with incurable neuro-muscular disorders live more independently. It is only the second residence of its kind. The first ALS residence was co-founded by Steve Saling, a landscape architect who was diagnosed with ALS in 2006. Saling sat with family and friends under a tent at UConn on July 19, communicating via an eye gaze computer and a synthetic voice. The Saling ALS Residence is one of 10 separate residences in a six-story, 95,000-square-foot skilled nursing facility known as the Leonard Florence Center for Living that sits on a hill overlooking Boston harbor. Saling played a part in the design of the residence, including developing a system that allows residents to control their environment from their computers using voice, eye or hand commands.