Vermont ALS family gets hope from ice bucket challenges - WCAX.COM Local Vermont News, Weather and Sports-

Vermont ALS family gets hope from ice bucket challenges

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DANVILLE, Vt. - "This was what it was meant for. That people could come, walk through the orchard and just find peace and serenity here," Susan Lynaugh says of her orchard.

Finding peace has not always been easy for Susan Lynaugh and her family. Susan has lost her mother Clara Langmaid, her sister Mary Prior, her nephew Curtis Vance, her cousin Dennis Myrick and, just two weeks ago, her brother Cliff Langmaid -- all to ALS.

"We needed a place to get away. We needed a place that people could come and if you just stop. You hear nothing," she says.

They started transforming this farm land into a memorial orchard after Curtis died in 1999. He was just 26-years-old.

"This was Curtis' favorite hunting spot and if you look down in the field you can see the one tree that we left that was his tree," she says.

For fourteen years now, this North Danville family has been raising money for ALS research being done at Mass General.

"Of all the people with ALS ten percent have what we call the familia form where it runs in the families and its dominant which is true in Susan's family," says Dr. Merit Cudkowicz, Chief of Neurology at Massachusetts General Hospital. "They have a really aggressive form of ALS and we know its caused by this gene mutation sod1. We're now at the point where we think we can intervene therapeutically in patients to turn off the gene and were hoping that that will stop the illness."

"This last June we made and sent to mass general $22,000 which is huge for this small community," Lynaugh says.

They do it the old fashioned way, making handmade quilts and even furniture to auction off.

"The Wells' in Danville bid it up to $1,700 and then immediately handed it back to the orchard. That's what kind of friends we have," she says.

Their community has rallied around them for years, and now they watch in wonder as the world becomes moved to help.

"Are we happy with this ice bucket challenge? We're ecstatic! We're over the moon that this could be happening because it is making people aware of this insidious disease that robs you of everything except your sharp, acute thinking brain still working," she says.

Susan took the challenge a week after losing her brother.

"It's beyond our wildest dreams that we could have this notoriety and that we could have people contributing the amount of money that they are!" she says.

As of Friday, The ALS Association says, it has received $53.3 million in donations compared to just over $2.2 million during the same time last year (July 29 to August 21). This includes donations from more than 1.1 million new donors.

"We are passionate about this and we're unrelenting," she says. "We're going to continue that battle and we're going to make sure that other people are not going to suffer in the way that our family has."

Researchers at Mass General have isolated and identified the inherited gene being passed down in Susan's family.

And Emory University has also studied the family and tested each one for that gene.

Susan says she has not found out if she is a carrier because of insurance reasons and also because she's not sure she wants to know.

She says her main concern is for her children.

For information about the MGH donor program, visit: https://giving.massgeneral.org/

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