Weyman Johnson - National Multiple Sclerosis Society

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Weyman Johnson

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Weyman Johnson

Weyman Johnson says he was “born at the right time.”

That may be an odd sentiment from someone who has spent nearly two decades battling a disease that sometimes seems indomitable, but Johnson has a unique vantage point from which to observe the MS movement’s progress. His father and aunt lived with MS; his sister lives with MS; and Johnson received his own diagnosis in 1990, not long after joining the board of the Georgia Chapter.

After an initial exacerbation, which seemed to be spurred by sitting in a warm tub for a digestive disorder, Johnson has been largely symptom-free. Whether this is luck (a.k.a. a “benign course”) or the disease-modifying drug he takes, is impossible to say for sure. But he keeps taking the drug. He quips that his worst symptom is survivor guilt — the sense that he feels better than he deserves to.

Johnson joined the Society’s National Board of Directors in 1995 and began a four-year term as chair in 2005. He says he has been pleased with the growth in the Society’s emphasis on supporting research — a function that has kept the Society high in the scientific community’s esteem since its earliest days. Pondering the hundreds of MS studies ongoing at any given time, Johnson believes the solution to MS will turn out to be as multifaceted as the disease itself.

“I think we will probably look back on it and try to judge the history of this science some years hence and see that there were a number of answers, and it has to be assessed in a variety of ways, not just one. I think it’s just the nature of scientific progress and research. It’s probably not one major clue, but a variety of several things,” he said.

Given his family history, Johnson is particularly interested in genetic research. He has donated blood to science and asked relatives to do the same.

“We were told it was a coincidence my father and his older sister had MS. It just didn’t sound right,” he said. “We were of a mind to pursue the genetic angle as soon as it hit us and we could no longer abide the fib that it was coincidental.”

Johnson recalls that the hardest thing about his diagnosis was telling his parents: “It was like going to your own funeral.” Daughters Chloë and Willa, then 10 and 5, took it better. Now in their 20s, the girls are aware of their predisposition to MS but not preoccupied by it, Johnson believes.

“They know that if they sense anything of a symptom, they call me or someone else and get a good recommendation for a doctor as soon as they can,” he said.

Professionally, Johnson is an attorney representing companies in employment disputes. He has even defended a few clients against claims by people with MS. But that doesn’t make him a villain.

“A lot of people think that if you represent a side that you’re rooting for something or other, but lawyers who represent companies often do a world of good for people by the advice they give,” he said.

“I don’t think the employer community is any better or worse than any cross section of any other group. They have an impact on people’s lives, and I think good employment lawyers, in advising them to do the right thing, help people.”

Johnson has been married nearly 34 years to Allison Forkner, a retired federal wildlife biologist. They live on a farmette near Atlanta where they have three horses, a donkey, several chickens and dogs, and, last time he checked, an elderly cat. Forkner is a successful dressage competitor, and while Johnson has lightened his case load, he doesn’t think he will ever retire completely from law.

As he looks to the future of the MS movement, Johnson wants to emphasize that it mustn’t be limited by national boundaries.

“The research that leads to some better understanding that starts to get close to a cure may be done in Israel or someplace. It might not happen here,” he said.

“That’s an important thing for all of us to realize: that we’re not alone in this. There are MS societies in most of the other industrialized parts of the world and they too are working hard to fight the effects of MS. We can better help to lead the global movement, and I think that’s one thing our present leadership has articulated that we need to pursue.”

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