Supporting An ALS Family With Grace

Jeff and Grace Madelone, and Megan Ackerley-Madelone PHOTO FROM JULIE HESS

Jeff and Grace Madelone, and Megan Ackerley-Madelone

A neighbor of mine recently has been diagnosed with Lou Gehrig’s disease, the progressive neurological disorder also known as ALS (amyotrophic lateral sclerosis). I see him several times a week, as his wife helps him to the car and to do simple tasks we all take for granted. This past weekend, he had a garage sale, where he sold off all his sports gear — his golf clubs, paddleboards, tennis equipment and much more. He was upbeat and positive, and most of those who were buying had no idea, but as I watched him struggle to move his shoulders and arms in these early stages of the disease, I’ll admit it broke my heart.

Sometimes, even though many of us participated in the ALS Bucket Challenge this past year, it doesn’t hit you until you see it up close, and slowly see its deadly progression. Like you, I’ve read stories about ALS and how it attacks a person’s voluntary muscles so that they are eventually unable to move their arms or walk, talk or breathe on their own. I’ve watched inspirational movies such as Pride of the Yankeesand Theory of Everything and shed many a tear. And I’ve interviewed those who have cared for well-known local sufferers, like Charlie Wedemeyer, Peggy Chun and Ann Kang, in their courageous final years. Through it all, I’m amazed at the courage of those inflicted and those who serve as care-givers.

Kailua’s Julie Hess, a physical therapist by profession, has the same feelings.

“I’ve worked in physical therapy for years, but until I watched a family friend go through this, I realize that this is the most devastating disease I’ve ever seen,” she says. “Your mind is still so clear, but you slowly lose one function after another, so that you’re virtually a prisoner and vegetable in your own body.”

Hess’s best friend’s husband, a former athlete named Jeff Madelone, has suffered with ALS for more than a decade.

“I’ve watched them go through this, and through it all, he’s handled it with so much grace, and so has his family,” she says.

Jeff and wife Megan live in New York with their daughter, 7-year-old Grace, who thinks the world of her daddy and helps her mom with the care-giving.

To honor how Jeff and his family handle this, and also because his daughter’s name is Grace, Julie organized what she is calling “First Annual With Grace 5K” fundraiser for Project ALS.

“All of the proceeds go directly to research to hopefully one day find a cure for Lou Gehrig’s disease,” she says.

The event is set for Saturday, May 30, at Kailua Beach Park. The 5K run starts on the path behind Kalapawai Market and will continue through the beach park around Lanikai loop and back to the starting point.

“It’s a beautiful place to come and spend the day with family and friends while supporting an amazing cause,” she says.

Unfortunately, the Madelone family won’t be able to be there to thank you for taking part.

“Jeff just got out of the hospital and it would be too difficult at this time,” Hess explains, noting the debilitating nature of the disease.

But you will receive a “With Grace” T-shirt for your $20 registration fee, and the knowledge that you’re helping out with a cause that devastates too many people who are close to so many of us.

For more information, call Hess with Project ALS at 381-7915, email her at or check out the website