MDA Night of Hope information: www.mdanightofhope.org.
Ed Tessaro of Alpharetta is fearless. That was true before the retired Macy’s executive was diagnosed with ALS in 2009 and his life entailed cycling in far off lands and climbing 30 mountains, including Mount Rainier five times. Since being diagnosed, Tessaro has kayaked in Antarctica, traveled European trails and refused to concede territory to the fatal neurodegenerative disease. His most fearless feat yet is the race to help as many people with ALS as he can by raising money for research — he is one of the organizers of the MDA Night of Hope Gala on Oct. 16, expected to raise $1 million. As if that weren’t enough, Tessaro also advocates for ALS legislation and teaches others with the disease how to take it on.
Q: What were your first symptoms?
A: I happened to be running in Asia, of all places, and my left leg was behaving oddly. I went to see Dr. Jonathan Glass who heads up Emory's ALS Center. I was diagnosed and heard the general expectation of a two-to-five year survival. As it's turned out, my progression is chiefly in the limbs, not the respiratory muscles, which progresses more slowly.
Q: What was it like to get that diagnosis?
A: It was an out of body experience, unimagined before. Here I was, a guy with eight percent body fat and I figured I was bulletproof. What gets me emotional is this inescapable notion that I'm breaking this long contract with my wife Judy. We have been married 46 years and now I've really screwed up.
Q: Haven’t you surpassed the expectations?
A: No one's beaten the prognosis, at least yet. I'm a bit of an outlier, breathing and speaking, driving and getting around independently. I'm really driven by four things: participation in a stem cell transplant trial at Emory, supporting future science by raising money for research and advocating for laws recognizing patient rights such as Georgia's "right-to-try" legislation. The bill, which would give terminally ill patients access to experimental drugs, is coming up again this session. Last, newly diagnosed families have options and I can help with equipment, ramps and a little handholding.
Q: What do you tell families?
A: Half the time we talk about the financial burden of ALS. Families can decimate 401(k)s and college funds living with the disease. That's a tragedy of a whole other proportion. The other half of the time we talk about fear. In my case, I don't have a fear of dying. My life has been full. A common subject is gratitude, and how we can all rediscover what makes us happy.
Q: What is the MDA Night of Hope?
A: The Muscular Dystrophy Association is the largest single provider of the science dollars for ALS. Every year, we give the Steve Ennis Hope Award, named after the man whose family started the gala, which has raised $5.4 million in 10 years. This year the honor is going to the family of Pete Frates. Pete is the former Boston College baseball player diagnosed with ALS. He and his friend Pat Quinn, who also has ALS, started the Ice Bucket Challenge.
Q: Why was the challenge was so successful?
A: Everybody in the nonprofit community does institutionalized fundraising. All of the sudden Pete and Pat decide to raise money for research by getting people to pour ice water on their heads. People loved the innocent and organic nature of it. And it is the best thing about person-to-person kindness and empathy.
Q: Are you doing too much?
A: Purpose is the best therapy. My life in many ways is more full now than it was before. I go deeper on everything — on friendships, on family, on spiritual things. This disease won't defeat me.
About the Author
