When advocacy becomes personal

Early last week, Harriet and Charlie Shaffer were busy at their Buckhead home and amidst its holiday decorations as they prepared for a trip to Connecticut to visit their son and his family.

They were both a little worried about packing enough warm clothes, given frigid weather in the northeast and the fact that they’d be spending lots of time watching their three grandchildren play in youth hockey games.

Time with family is especially important because of a health challenge Charlie faces.

You might recognize Charlie’s name. He’s been one of Atlanta’s leading citizens for decades.

An attorney with law firm King and Spalding, Shaffer was one of the Atlanta 9, the small group that first decided to pursue bringing the 1996 Olympics to Atlanta. A University of North Carolina graduate, he’s also been the chair of the Atlanta Sports Council, which brought the Super Bowl here in 2000, and he’s served as the head of the Marcus Institute, a center for children with developmental disabilities. And that’s just a part of his resume.

About three years ago, he realized he was forgetting a lot of things.

“I began to notice that my memory wasn’t A-plus,” he said. “It got to the point that it bothered me.”

Following the advice of a friend who was a doctor, Shaffer decided to be tested. The news wasn’t good.

“It was a blow to know it wasn’t normal aging,” Harriet said.

Charlie, 71, has Mild Cognitive Impairment, a gentle-sounding phrase that belies terrifying implications.

For Charlie and Harriet, their three children and nine grandchildren, it was the worst kind of news: their beloved patriarch would almost certainly develop Alzheimer’s Disease.

When a man and his family are greeted with such a thing, the typical reaction is to close ranks. To protect him. To worry. To guard him from the stigma of illness.

But not this guy. Not this family.

“I was a trial lawyer,” Charlie said. “I love to advocate.” And in supporting Alzheimer’s awareness and research, he believes he found “a cause that is compelling.”

He would keep no secrets, not shy away from friends about it. People needed to know.

While Charlie took that view from the beginning, Harriet, their son and their two daughters were less sure — especially the women.

“I am very private,” said Harriet, who’s been married to Charlie for 50 years. “It was hard for me.”

The family met and debated the issue.

“The spirit of my dad was not going to be stopped,” said son Charles.

This has led to Charlie talking openly with friends, raising money and giving public speeches, including at a fund-raising event for the Emory University Alzheimer’s Disease Research Center.

His decision, of course, has put pressure on his family, said Charlie’s son, who gave an emotional introduction for his father at the Emory event.

“We all know we’re in for a difficult road,” Charles said.

It’s hard to overstate how important Shaffer’s work might be.

The statistics around Alzheimer’s and dementia are stunning and scary. A recent report by Alzheimer’s Disease International estimated that 135 million people worldwide will live with dementia by 2050.

According to Allan Levey, directory of Emory’s Alzheimer’s Disease Research Center, 7.7 million Americans will have Alzheimer’s by 2030, unless research provides a breakthrough. He provided an estimate that says their care could cost $1 trillion.

“There’s no way the country or the world can afford it,” he said.

Several factors contribute to the challenge, including success with other diseases that lead to longer lifespans. Alzheimer’s has a lower profile and receives less money for research.

And perhaps worst of all, the disease lacks a high-profile victim to advocate — it has no poster boy or girl.

Why? Because Alzheimer’s has no survivors — no Lance Armstrong or Robin Roberts to publicize the cause. Everyone who gets Alzheimer’s dies, and along the way they lose their ability to effectively communicate.

And that’s why Charlie Shaffer’s approach is so important.

Levey knows Shaffer. He’s one of his doctors.

“It’s very uncommon for people to be public about their memory problem,” Levey said. “What Charlie is doing is amazing.”

Shaffer knows that his window of time to do this work is unpredictable. Recent medical reports have been optimistic and show a slow advancement of the disease.

As he goes about his efforts to raise money, he’s focused on what he can do for others.

“It’s not about me,” he said. “Contribute because you might get it.”

Shaffer has spent years devoted to important causes and issues he cares about. One of Atlanta’s most accomplished citizens just wants to keep doing it.

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