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.

4 responses to “Jon Maddock: All In Against ALS

  1. Jill Turner Odice

    My Dad was Gerry Turner. He did photographic portraits of many kids and families in the Westport area from 1966- 1982. He was diagnosed with ALS in 1980 and passed away in 1982 from it.
    He managed to stay home with the help of my family caring for him. We did have visiting nurses to give us a break, but it was a very difficult ordeal to watch as he got weaker and more disabled. He had a great sense of humor through it all, but it was still a horrible way to go. Nobody should have to die like this.
    Now all these years later there still is no cure. If there is any possibility that this new drug can make living with ALS even a little easier then it needs to be made available yesterday!

  2. Thank you Dan for shining another light on the urgency and need for change in the fight against ALS. At last count, the petition had more than 20,000 signatures and our hope is we can hit 100,000!

    For most folks, ALS is sporadic, meaning it can hit anyone (race, gender, age, health) without warning. So while signing the petition may help Jon today, it may also be helping you or a loved one at some point in the future.

    ALS is a cruel disease. But people like Jon and Mom inspire us with the amount of work and advocacy they accomplish everyday while their body (not mind) fails them!

    The petition takes 60 seconds to fill out. The drug it asks to fast track has added 6 weeks of function for ALS patients. The math is simple. Please sign!

    Westport has been so good to my family and we cannot thank everyone for their support from the moment mom was diagnosed in 2017. She’ll likely be chiming in to say thank you on this thread–now typing with her eyes!

    Jon, I am so sorry about your diagnosis. The Haberstrohs are here for whatever you need!

  3. Jonathan Maddock

    Thanks, Steve.

    I’m also a candidate for the Healey Platform Trial. Yay!

    https://www.massgeneral.org/neurology/als/research/platform-trial-sites

    If enough delaying therapies become available, it will be a blessing for many. I keep praying.

  4. There is a dentist near Austin, TX who cured his ALS by removing the mercury fillings in his teeth. He was a triathlete when he first got ALS. He’s older now but amazingly fit. It takes a very specialized dentist (biologic dentist) to remove the filings so as not to toxify the system even more. You can read his story here: https://www.healthysmilesforlife.com/dental-blog/how-mercury-toxicity-can-undermine-your-health/

    I wish you well and I’ll sign the petition.

    (We had an army of people fighting the FDA for five years to get them to approve a treatment for Neuroendocrine Tumor that they’d been using successfully in Europe for 20 years! I had to go to Switzerland for it, along with Steve Jobs and hundreds of other Americans. It was finally approved in 2018. Getting the insurance to pay was another matter…The treatment costs $10,000 in Switzerland but they charge $42,000 for it here (and the US company didn’t have to do any of the R&D!). Not sure how they get away with it.)

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