One woman's push to raise awareness of ALS - WCAX.COM Local Vermont News, Weather and Sports-

One woman's push to raise awareness of ALS

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A South Burlington woman is pushing herself to the limits, fighting to raise awareness for a rare and devastating disease that for her, hits close to home.

While most people are unwinding from work Monday evening, Heidi Smith is motivating her Spartan Race Team to push themselves.

They're training for a 13-plus mile run up Killington with obstacles like crawling under barbed wire and chopping wood.

"It's unbelievable how much she can do just on top of everything else she does," said Smith's training partner, Emily Sanders Garcia.

That's because by day Smith cares for her husband Frank. He has ALS, also known as Lou Gehrig's disease.

"We don't know how he got it, where it came from," Smith explained.

ALS is a neuro-degenerative disease that affects 30,000 people nationwide and about 100 people in our region.

"Your neurons die and stop sending messages to your muscles so your muscles stop moving and eventually a person becomes paralyzed," explained Lisa Anderson with the ALS Association of Northern New England.

Frank, an active father of two, was diagnosed in 2010 after muscles in his arm and chest began twitching uncontrollably.

"Frank did everything right. He exercised every day, he did 100 situps or 200 situps in the morning, close to that with pushups and pullups," Smith said.

Now Frank is unable to communicate verbally. Doctors don't know why ALS affects some and not others. There's no known cause and no cure.

"It's heartbreaking to see the person you love most deteriorate and knowing that there's nothing you can do to change this, and there wasn't anything that you did to cause this," Smith explained.

But she is doing something. Smith is using the Spartan Race as a tool to raise money for research for the rare disease.

"We're really using our muscles to help people like Frank who are losing the strength and there's and there's a real beauty in that," she said.

And the story of her and Frank has touched many of her teammates along the way.

"I felt at age 56 I could muster up a challenge and help the cause," said participant Bill Allen.

"It doesn't get the amount of attention it deserves, I think," said Anderson. "And therefore it doesn't get the same amount of research dollars like other diseases such as cancer that affect more people."

Heidi and her team hope to raise $50,000 before the Spartan Race at the end of September.

Spartan Race Information http://web.alsa.org/site/TR/Rides/General?sid=8531&type=fr_informational&pg=informational&fr_id=9580

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