Local couple on a mission of HOPE in fight against ALS

John and Linda Gregoire bring hope, help and understanding to ALS patients. Contributed / HOPE-JG Fights ALS

When John Gregoire was diagnosed with ALS 15 years ago, he and his wife, Linda, could have given themselves over to sadness and despair, but instead, they put their heads and hearts together to try to do something positive for other people who were also fighting this terrible disease.

One of the biggest fundraisers for HOPE-JG Fights ALS is the annual HOPE-JG Fights ALS Charity Golf Scramble. This event began seven years ago and has run every year except the last two due to COVID. This year’s event will take place Aug. 29 at The Woodlands in Falmouth.

HOPE-JG was born in 2014. The name came from a friend of John’s, who, while in Costa Rica, wanted to write a message from John in the sand. He asked what that message should be and John replied, “hope.” His friend wrote HOPE in capital letters followed by a hyphen and JG for John Gregoire and the charity’s nomenclature was found.

Over the years since then, John and Linda, with the help of friends, have spent countless hours trying to make the lives of families living with ALS a little easier. It is their vision to give people hope and offer ways to deal with the disease in practical, innovative and spiritual ways.

“We wanted to do our part in the overall fight against ALS,” Linda said. “Neither of us had experience on a board of a nonprofit before.”

Amyotrophic lateral sclerosis is a progressive, fatal nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control, according to the Mayo Clinic.

ALS is often called Lou Gehrig’s disease, after the baseball player who was diagnosed with it. ALS often begins with muscle twitching and weakness in a limb, or slurred speech. It eventually affects the muscles needed to move, speak, eat and breathe. There is no cure.

Recently HOPE-JG Fights ALS, which is the charity’s new name, provided roll-in showers to three people in need with collaboration and assistance from Bathfitters. The showers can cost up to $7,000, so this was a blessing to the families who received them. They’ve also provided on-demand generators, wheelchair lifts, handicap ramps and home-heating assistance to others. At Christmas, they offer gift cards to families to help cover the cost of holiday gifts and meals.

In addition, HOPE-JG Fights ALS offers advice on feeding tubes and the best formula to use.

“When most people go on a feeding tube, they are given the most inexpensive formula, which is high in corn syrup and soy oil,” Linda said. These components can cause gastric distress and inflammation. The charity promotes the use of whole food non-GMO formula and has helped people win their appeals for these higher-quality products, sometimes providing actual formula until the appeal was won.

HOPE-JG Fights ALS understands what families with ALS and other debilitating diseases face each and every day. John, Linda and their sons have been living with ALS since 2007 and know the struggle of those afflicted and the never-ending work of their caregivers. The HOPE-JG team can provide advice and connections based on their personal experience. Their work with cutting-edge innovators helps provide a range of products and services to make life more liveable for ALS patients. All that they provide is offered lovingly and you can be sure it is always given in the spirit of HOPE.

The goal is to raise $20,000 through the golf scramble, a highlight of which is a display of six Vince Lombardi Travel Trophies. Hole sponsorships are still available to businesses for $250 each. A sign will be placed at the hole of the business’s choice to show their support for the cause. Two businesses may split sponsorships for $125 each. To learn more, go to hope-jg.org.

Approximately 144 golfers have signed up to participate as of Aug. 17, and individuals are also welcome to contribute by going to the charity’s website. Monthly donations start as low as $6, or give a one-time donation. Those who would rather donate their time or do a fundraiser of their own can contact the charity at 613-4543.