ALS Can’t Block Ed Tessaro from a Purpose-Driven Life

By Jarrett Oakley   |   October 24, 2018

Don’t try to typecast Ed Tessaro.

Yes, he is as visibly associated with the fight against amyotrophic lateral sclerosis (ALS) as just about anyone in America. Yes, he was one of the first patients in a widely watched, experimental stem cell transplant trial. Yes, he speaks at national ALS conferences and testifies before numerous congressional and state committees, arguing for more research money or bills to give patients greater access to experimental drugs.

Ed’s countless admirers include JOYN CEO David Geller. “He’s been a great role model for me and the firm,” David says of the 72-year-old Alpharetta resident and JOYN wealth management client. “I am still frightened of ALS. The way Ed has handled it … has shown me that as you endure those inevitable losses, you can build a remarkable life.”

However, Ed politely but firmly asks that you realize this much about him: “I don’t want to be the poster boy for ALS.”

“My wife (Judy) and I don’t spend five minutes a week talking about ALS unless I am getting a piece of equipment or something. I want to live, every day.”

So, at the same time Ed was helping organize the 13th annual Night of Hope Gala, held Oct. 19 in Atlanta with help from the Muscular Dystrophy Association  (JOYN also is a sponsor), he guided his powered wheelchair into SunTrust Park for both Braves-Dodgers playoff games. Over the next few weeks, he will host several ALS-stricken families at his home for support talks, but he also will plan a month-long family gathering in Italy to celebrate his 50th wedding anniversary next spring. That gives you a sense of how Ed balances his drive to help people cope with ALS with his insistence on the fullest life possible.

Beating the Odds

No one ever had to prod Ed into activity. In 2009 at age 62, he was five years into retirement from an executive career at Macy’s. He was constantly outdoors: Climbing peaks like Mount Rainier, running half-marathons, distance-cycling, sailing. Then, while running during a visit to Thailand, his left ankle inexplicably rolled over.

Ed returned home and consulted an orthopedist, who diagnosed him with spinal stenosis, or a narrowing of spaces between vertebrae. But four months after back surgery, both of his ankles started rolling. This time Ed went to a neurologist and received a much different, and devastating, diagnosis: ALS.

Also called Lou Gehrig’s Disease, ALS strikes the neurons that control certain voluntary muscular movements. Over time, it will either weaken or extremely tighten those muscles and eventually paralyze them. More than 5,600 people worldwide are diagnosed with ALS, and today about 30,000 Americans are afflicted. Life expectancy is typically two to three years if the respiratory muscles are affected or about five years if the disease starts in someone’s limbs, as in Ed’s case.

Meaning, Ed already has lived twice as long after an ALS diagnosis as conventional medical wisdom would predict. “So here I am talking to you, way past my shelf life,” he chuckles.

Night of Hope Offers a Cause

But Ed recalls reeling from the initial diagnosis, more for the impact it would have on Judy and their two adult children than on himself. A staffer at the Emory University ALS Center put him in touch with Holly and Palmer Proctor of Atlanta, who were spearheading a new black-tie gala on behalf of ALS research because Holly’s father had recently been diagnosed. Over lunch, the Proctors sensed that Ed knew how to network to raise money and asked him to sign on with the Night of Hope Gala.

Over 12 years, Night of Hope has raised more than $8.3 million for ALS research, awareness and family assistance. At this year’s event at the Intercontinental Buckhead, the honoree will be Dr. Jonathan Glass, director of the Emory ALS Center.

An extremely self-aware man, Ed says he has never feared death, before or after his diagnosis, and has the same life priorities as before. “My friends tell me they can’t get Ed out of the moment. I am still that guy who at 27 wanted to go to Europe but didn’t have any money, so he got an American Express Card and figured out how to pay for it later.

“Waking up with a purpose is important. It’s good therapy, just on a fundamental level. I like the idea of making a contribution that helps keep John Glass in business.” Apart from learning to focus his mind on objectives every morning, Ed also gets a lot of benefit from 90 minutes of meditation on his lakeside dock most days.

Keeping Real About Money

How has his perspective on money and building wealth changed since he was diagnosed?

“I was never super money driven,” Ed muses. “I never needed anyone to tell me, ‘You can’t take it with you.’ The message from JOYN and David is always Behavior Wealth Management, whole life. Every time I talk with them, the discussion is always about me, my happiness and how I’m doing. I was kind of that guy already, but they’ve reinforced that.

“Their philosophy and mine dovetail nicely, to the point where I don’t think about money at all now. The way I think about money … I was never super money driven. The JOYN message is always whole life. I never needed anyone to tell me, you can’t take it with you. Every time I talk with them, the discussion is always about me, and happiness and how I’m doing. I kind of was that guy already, but they reinforced that. Their philosophy and mine dovetail nicely, to the point where I don’t think about money at all now.”

The Value of Your Time

To David Geller, the way Ed Tessaro has chosen to live his life personifies how someone’s giving of time and talents is “a much more powerful experience” than writing a check.

“You do get some blessings and benefits from a disease like this,” David believes. “Ed is under no illusion that he has unlimited time left, but most of us are. The disease gave Ed some wisdom that many of us lack.”

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