COVENTRY -- About five months ago, a group of Flat River Middle School eight graders watched with awe and wonder a video of the 2005 Ironman World Championships, in Hawaii.
Their focus was on one competitor in particular -- Jonathan Blais, a 34-year-old Seekonk resident with amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. The disease damages the spinal-cord pathways and motor neurons, destroying the body's muscles.
Diagnosed a year ago, Blais -- a.k.a. "the Blazeman" -- had virtually no use of his hands and arms, making it extremely difficult to compete in the Iron Man triathlon, which features bicycling, track and swimming. But he crossed the finish linein 17 hours -- faster than many.
His determination inspired the 54 eighth graders to organize a 5K run/walk. "The Blazeman 5K" begins at 10 a.m. tomorrow, rain or shine, at the middle school on Flat River Road. (Last-minute entries are welcome, starting at 8 a.m.; the fee is $20.)
"I got blisters putting up posters for the event. My feet hurt so badly, but I didn't want to give up, because he didn't," said Aimee Mello, 13. "He had drive. It was very hard for him to move and he finished. Just for someone to have that motivation and that drive was amazing."
All proceeds from the 5K will benefit the Amyotrophic Lateral Sclerosis Therapy Development Foundation (ALSTDF).
"I saw his struggle and I cried," recalled Kara Debaene, 14. "I saw all the tough times he was going through to finish. He was such a strong person. You cannot fight without medicine and we need to do something, because so many lives are taken by this disease."
Blais visited the middle school in December, bringing a video of the competition, at the invitation of teacher Vicki Norris-Karten, who has known him for nearly 20 years.
After watching the video, the school's roughly 200 eighth graders bombarded Blais with questions. After that day, some students quickly mobilized under the guidance of Norris-Karten and teacher Maureen Martineau to plan the fundraiser.
They brainstormed, coming up with ideas for a raffle, also to be held tomorrow, and other promotions to attract participants to the event. They consulted a racing expert, contacted corporate sponsors, put up posters, sent out correspondence.
They went to work canvassing Coventry, raising money by "canning" -- going door to door with a can asking for money.
Including donations from corporate sponsors, local businesses and individuals, and preregistration fees from more than 330 participants in the race, the students netted nearly $20,000, Norris-Karten said.
"People were mailing in checks," she said. "Every day I'd come home and find checks in mail, hundreds of dollars, all made out to ALSTDF. It's unbelievable."
The students learned all about ALS too. They did their research and armed themselves with the facts about the disease's swift and devastating effects.
"It's horrible that there's no treatment in 70 years [since the disease was identified]," said Erin Cooney, 14, who led the students' efforts. "Other diseases, there are so many treatments. [With ALS] there has been no progress, no FDA-approved drug."
Imagine not being able to scratch an itch because you can't move your hand. Or hold a toothbrush or a can of soda. Or tie your own shoe. Or talk or walk properly.
Now imagine not being able to do anything about it or take something for it. Imagine facing the probability of death within two to five years of diagnosis.
Welcome to Jonathan Blais' world.
He grew up in Seekonk, where he lives with his parents, Robert and Maryann. He graduated from Seekonk High School, where was a triathlon all-star. After graduating from Rhode Island College, in 1996, he became a special-education teacher in San Diego, Calif.
In the spring of 2004 he started experiencing a twitch in the hands, a telltale sign of ALS. The following winter, he began having difficulty writing and muscular stiffness began spreading across his upper body.
It was on May 2 of last year -- coincidentally the same date, in 1939, that Lou Gehrig played his last game for the New York Yankees -- that a neurologist told Blais that he suspected ALS. Another doctor made a firm diagnosis less than two weeks later.
Blais completed his teaching duties in San Diego. He moved back to Seekonk in July, but the following October he traveled to Hawaii for the Ironman.
Now he has had to put running behind him.
"You get ALS and there's nothing they can do for you," Blais said. "Every muscle in the body stops working. I have no strength in my arms. I can't hold up a glass of soda. I use a straw. "
As many as 85,000 people succumb yearly to the disease that, according to Blais, some describe as "the bulldozer that bulldozes your life." The disease is degenerative; killing the motor neurons, which send the brain information to the muscles.
As many as 30,000 Americans have ALS, and an estimated 5,000 people in the United States are diagnosed with the disease each year. ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people can also develop the disease.
Blais works closely with ALSTDF, a nonprofit biotech company that operates a research facility in Cambridge, Mass., to heighten public awareness of the disease. He networks with other ALS patients, posting their stories on his Web site -- www.alswarriorpoet.com.
Blazeman 5K events and races are being held all over the country this year, according to his Web site.
What the students at Flat River Middle School have accomplished inspires him, Blais said.
"It was unexpected. There's nothing for ALS. They are putting an event together. They are doing something."
Online at:
http://www.projo.com/ri/coventry/content/projo_20060512_cv12walk.2202328f.html