Falmouth fundraiser a homecoming for ALS activist

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FALMOUTH — Back when he was a student at Falmouth High School, John Gregoire was a two-sport athlete.

The Windham resident will be returning to the school Thursday night, Nov. 13, for a fundraising event, but as a very different person than when he graduated in 1975.

Gregoire, 58, was diagnosed with ALS in 2007. Short for amyotrophic lateral sclerosis, and commonly known as Lou Gerhig’s disease, ALS stormed to the public’s attention this summer with the ice-bucket awareness challenge. It is a neurodegenerative disorder that causes muscle weakness and atrophy throughout the body.

In what he calls “a bit of irony,” Gregoire’s homecoming will be on the seventh anniversary of his diagnosis.

Gregoire, who was a management consultant for 15 years before his diagnosis, now runs a non-profit called the Hope-JG Foundation, which is dedicated to helping families living with ALS and other neuromuscular diseases. To do this, the foundation hopes to establish an ALS/MS residence in Maine, and to inspire and promote innovative technologies for those with ALS or other neuromuscular diseases.

The residence, which Gregoire said would be modeled after the Leonard Florence Center for Living in Chelsea, Mass., would initially be a 10-unit house.

Like most affected by ALS, Gregoire has to use a wheelchair for mobility. His speech is impaired, so when he returns to Falmouth, he will address supporters using an iPad. The main event of the evening will be a screening of “Hope on the Horizon,” a documentary about hikers who summited the 48 highest peaks in the White Mountains of New Hampshire to raise awareness and funding for ALS patients and their families.

Admission to the event is $15 for adults and $10 for students; $30 benefactor packages are also available, which include one admission, a foundation T-shirt, and a custom foundation bracelet. Foundation merchandise will also be for sale. The event starts at 7:30 p.m.; doors open at 6:45 p.m.

Through email, Gregoire said it was “kismet” that he’ll be returning to Falmouth for this event. He said he reached out to several movie theaters for the screening, but found the only availability they had was in the mornings. He said after looking at other venues, he reached out to Falmouth High School senior Sarah Caldwell, whose father had died from ALS.

“(She) was able to secure the beautiful Performing Arts Center at the school and we’re so excited and blessed to be holding an ALS awareness event in the school I graduated from 39 years ago,” Gregoire said.

Gregoire said the focus of the foundation is that ALS affects the entire family, not just the person.

“Before the main event, I’ll be making some remarks and hope to introduce a video of some of our ALS heroes, some of whom have survived 20 years with ALS,” he said.

The night will also act as a fundraiser, with 100 percent of the proceeds going to the Hope-JG Foundation, to be used “to help us continue to push towards our goal of partnering with a like-minded, existing long term care facility to build an ALS/MS Residence in Maine,” Gregoire said.

Gregoire said there is a need for a long-term care facility with access to ventilators, and that while it is a “mammoth undertaking” that will “require the right partner and millions of philanthropic dollars,” it is necessary.

“ALS patients are often brilliant, intact minds, trapped in a broken body. There’s no need they should be warehoused and ignored or worse, decide not to vent and hasten their demise because there is no place for them,” he said. “We respect the very personal decision to vent or not to vent. ALS patients in Maine should have options.”

Colin Ellis can be reached at 781-3661 ext. 123 or cellis@theforecaster.net. Follow him on Twitter: @colinoellis.

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Windham resident John Gregoire, originally of Falmouth, was diagnosed with ALS in 2007. He is the co-founder of the nonprofit Hope-JG Foundation, which helps families living with ALS and other neuromuscular diseases. The foundation will hold fundraiser on Nov. 13 at Falmouth High School.

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Reporter covering the Portland Public School District as well as the town of Falmouth for The Forecaster. Can be reached at 781-3661 ext. 123 or cellis@theforecaster.net.