Tag Archives: Jon Maddock

Jon Maddock: All In Against ALS

Jon Maddock’s Westport roots run deep.

His father Larry was a well-known local mason — as were Jon’s grandfather and great-grandfather. Jon idolized his father, and worked summers for him through high school (Staples Class of 1973) and college (University of Maine 1977).

Jon Maddock, in 9th grade at Long Lots Junior High.

But Jon did not go into the family business. He built his first engine-powered model plane in 4th grade, learning from mechanical drawings. He followed a variety of career paths — including 5 years as a stockbroker — before realizing that design suited him best. His current position is senior designer at Laars Heating Systems Company in New Hampshire.

Jon was also passionate about physical activity and challenges. He bicycled from California to Connecticut (taking an indirect route of more than 5,000 miles), skied alpine and cross, sailed and raced beach catamarans (and was commodore of the Sandy Hook Catamaran Club/Hobie Fleet 250), mountain biked, ran long distances, skated (inline and figure), and enjoyed trout and fly fishing.

He played trombone (and was a member of the Fred Robinson Big Band), and built furniture (as well as, of course, stone walls). Jon has always been active and stayed fit. If he did something, he was all in.

Jon Maddock, in action.

But in July of 2019 he was diagnosed with ALS.

His life changed profoundly. A year later he struggles to talk. He walks slowly, with a cane.

His prognosis is like all ALS sufferers. He will slowly become paralyzed, and eventually be unable to breathe. The average life expectancy is 2 to 5 years. Though 10% of those stricken with ALS live for 10 years, there is no known cure.

The Ice Bucket Challenge has brought money to the cause, and research has escalated. But Jon — and so many others, including Westporters — are in a race against time.

Jon contacted “06880” because — throughout his life — the town has inspired him. Now he wants to share information about a new medication. So far, Jon says, tests show that AMX0035 has significantly slowed the progress of ALS. (Click here for an NPR report.)

The ALS Association is seeking early approval from the Food and Drug Administration. Without it, more than 3 years could elapse before the medication is available. “That’s not long enough for many of us,” Jon says.

The ALS Association is presenting a petition, along with data, to assist in gaining early approval from the FDA. Jon hopes “06880” readers can help (click here).

Jon Maddock takes a break from work.

“Westport is a superb community — rich with the best schooling, the arts, and compassionate people,” Jon says.

“I have been gifted throughout life for having been exposed to the inspiration that Westport exudes.”

Now he asks Westporters to inspire the FDA to act soon. For Jon Maddock, it’s a matter of life or death.