Friday, September 19, 2014

ALS Ice Bucket Challenge hits close to home for Windham Christian Academy - By Michelle Libby

Last Friday, on a hot September day, the staff and students at Windham Christian Academy opened their hearts and wallets to raise money to support ALS, but for the WCA community, ALS has affected them directly with the passing of Jaclyn Taylor’s father, Keith Taylor, from ALS this past spring and the father of Matt Gregoire, John, who is still fighting the battle. 

“It was truly heartening to see the outpouring of love and joy at such an event,” said John Gregoire, the co-founder of The Hope-JG Foundation, which received more than $400 in donations from the event.
The money raised will go toward the building of a home in Maine for meeting the specific needs of those who suffer from ALS and Multiple Sclerosis.   

The need for a house is explained by John in an email, since he is speech impaired. “Gail Kennett had ALS and, as of June of last year, had been in the Maine Medical Center for over a year. The reason for that is, she was vented, as many ALS patients are, but unbelievably, there are no nursing homes/long term are facilities which will accept a patient on a ventilator. One of the things that makes ALS different from all other neuromuscular diseases is the mind stays intact and alert even though the body may be paralyzed (Stephen Hawking being the most notable example).”

John continues to talk about the Steve Saling ALS/MS Residence in Massachusetts. “We made arrangements with Steve for a tour and were blown away at the technology and quality of life of the residents, one of whom (Patrick O'Brien) is completely paralyzed and ventilator dependent. Patrick is finishing producing a movie about his ALS experience.” One way to see the ALS residence is to visit!projects/c21kz.  

Students at WCA paid $5 to dump ice water on a teacher. It cost $10 to douse Principal Roy Mickelson. He purchased 40 pounds of ice for the challenge. 

Just before he was soaked, Mickelson told John Gregoire that he would pay for Matt and Jaclyn to dump a big tub of water on him. The two didn’t hesitate to get at the back of the line.  

The $400 is not enough to fully fund the residence which will give these people the independent living they need. John estimates that it will cost between $3 and 5 million. 

The options for someone with ALS or MS who is vented to breath is the hospital or hospice without a facility like this house, said Linda Gregoire, John’s wife. 

“(The Ice Bucket Challenge) has really kept him going,” Linda said. “It gives him a purpose. He’s got a heart to help people in the same situation.”

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