2014-02-27 / News

Local woman trains for 270-mile bike ride across three states Where in the world?

By Ken Shane

David Leys David Leys For the 12th straight year, hundreds of riders will peddle 270 miles over three days and three states with a singular goal: To raise money for the thousands of Americans who suffer from ALS.

The ALS TDI Tri-State Trek takes place on the final weekend in June. The ride is organized by its namesake, the ALS Therapy Development Institute, a Massachusetts biotech firm that operates the world’s largest research program focused on amyotrophic lateral sclerosis. Proceeds from entry fees and rider sponsorships fund treatment development for the crippling disease.

The event has raised more than $500,000 to date.

There are about 30,000 people in the United States, and half million worldwide, who suffer from ALS. The disease, more commonly known in America as Lou Gehrig’s disease after the Yankees slugger who contracted it, is a progressive disease that shuts down the body and eventually leads to death. Perhaps the most notable person living with ALS today is physicist Stephen Hawking.

David and Diane Cormier, of Columbia Avenue, took to Press to the fortress of Hohensalzburg in Salzburg, Austria. The structure is 820 feet long and 490 feet wide, and one of the largest medieval castles in Europe. David and Diane Cormier, of Columbia Avenue, took to Press to the fortress of Hohensalzburg in Salzburg, Austria. The structure is 820 feet long and 490 feet wide, and one of the largest medieval castles in Europe. Among the riders this year is Trice Kilroy of Jamestown. Kilroy will ride as a part of Team Leys, named for David Leys, a teammate who has been stricken by ALS. The team hopes to raise more than $25,000. Prior to Leys falling ill, the team rode with him to raise awareness for leukemia and lymphoma.

About a dozen riders make up Team Leys. Kilroy said the team decided to ride this summer because there is no cure yet for ALS.

“We decided we should do this ride and make people aware they need some money to do some research,” Kilroy said. “The thing with ALS is it effects the body everywhere, except the mind. Your brain is perfectly fine, and your body is falling apart everywhere around you. It’s terrible. Dave Leys is a great guy, and it’s hard for us to see our teammate going through this.”

According to Kilroy, the event will be a stretch for the riders on her team. They usually ride in “century” events of 100 miles. The Tri-State Trek will be 100 miles on the first day alone. There will be another 95 miles on the following day, and 75 more miles on the third day. The team normally trains during nice weather with a couple of rides during week and a longer ride on Saturdays. Although Kilroy hasn’t yet seen the training schedule for June’s ride, she assumes there will be back-to-back distance rides on Saturdays and Sundays in order to prepare for the 270-mile marathon.

While some team members are using social media to raise money, Kilroy is asking her friends by letter. Since she also competes in the annual Save The Bay swim across the East Passage, she is using one letter for both fundraising efforts. It gives her friends a choice of events to choose from.

“Some of us throw parties or some sort of fundraising dinners,” Kilroy said. “I choose to contact all of my friends and talk them into supporting me.”

To donate to Kilroy’s ride, visit TST.ALS.net/tricekilroy, or send a check made out to Tri-State Trek to Trice Kilroy, 66 Highland Drive, Jamestown, RI 02835. Donations are tax deductible.

According to Dave Virden, director of development at the ALS Therapy Development Institute, the company was founded in 1999 as the ALS Development Foundation by a family impacted by the illness. It became the institute in 2007. About 30 scientists and doctors work in the Cambridge lab looking for a cure.

Virden said most people afflicted with Lou Gehrig’s disease usually die within two to five years.

“It’s a fast mover. It shuts down your muscles and you become a prisoner in your own body. Eventually, unless you elect to go on a respirator, your lungs shut down.”

There are a lot of theories about what causes ALS, which was first recognized in humans in the late 19th century. There are no known treatments or benefits to early intervention. The disease does have a genetic form. Some victims are random, but a gene in some families can cause multiple deaths in the same generation. The ALS gene can be identified through tests.

This year’s trek begins at the Boston College campus in Newton, Mass., on June 27. The riders will travel 100 miles to the University of Connecticut in Storrs, where they will stay overnight in dorms. The following day it’s on to West Haven, Conn., and another overnight stay on the campus of the University of New Haven. The ride ends on June 29 at Roger Sherman Baldwin Park in Greenwich, Conn.

On day three, riders cross over from Ridgefield, Conn., to South Salem, N.Y., making New York the third state. After trekking through the New York towns of Lewisboro and Bedford, the riders cross back into Connecticut toward the finish.

As many as 250 riders have participated in the past. Virden hopes the number will grow 20 to 50 percent this year. In past years the event took place deep in July, with the accompanying heat. He hopes the earlier start will reduce the dangerous effects of the mid-summer heat and attract more riders.

Virden hopes that a new, shorter 18-mile “family ride” in Greenwich on the last day will bring more participants. Riders can opt to take part in the entire ride, a single day or any combination. There will be a rest stop every 20 miles along the route with hydration and food. The registration fee is dependent on the length of the ride. For all three days, the fee, which includes food, is $185. A minimum fundraising donation of $1,800 is also required for three-day riders.

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