By AMERICAN HEART ASSOCIATION NEWS

Survivors enjoyed the fun atmosphere of Stroke Club gatherings in photo 1. Ellis Williamson in photo 2. Dr. John Derrick and Ellis Williamson in photo 3. (Photos courtesy of the Williamson family)

Survivors enjoyed the fun atmosphere of Stroke Club gatherings in photo 1. Ellis Williamson in photo 2. Dr. John Derrick and Ellis Williamson in photo 3. (Photos courtesy of the Williamson family)

After Ellis Williamson of Galveston, Texas, had a stroke in 1964, he helped break new ground in patient advocacy, empowering stroke survivors in a time when stroke carried stigma.

He was in his mid-30s when a stroke left him unable to speak or walk. After months of rehabilitation, Ellis went back to his job as an accountant and soon met Betty Lynch. The couple married in 1968 and had three sons, Chris, Gary and Steve.

“Ellis later told me that when we met, he was worried I wouldn’t be interested in him because he was disabled,” Betty said. “That’s how much of a stigma surrounded stroke at the time.”

Seeing the resilient, optimistic newlywed led his doctors, Tom Kirksey and John Derrick, to recruit Ellis to lead a new support group for stroke survivors at the University of Texas Medical Branch. They called it the Galveston Stroke Club.

“Ellis would do anything to help another stroke survivor,” Betty said. “In everyday life, he was very quiet, and almost shy. But if there was an opportunity to be of service to a fellow survivor, he became a different person.”

Ellis encouraged survivors to bring family and friends to the meetings. He made each gathering a celebration.

“Today we take it for granted that people have self-help groups. But at the time, this was a groundbreaking concept,” said Ellis’ son Chris, who lives in New York City. “The idea of coming together with others who faced the same challenges, discussing those challenges openly and, most important, channeling all of those collective fears and uncertainties in a positive way … this was unheard of.”

Ellis began publishing a quarterly newsletter and wrote letters to doctors around the country, asking them to tell their patients about the Stroke Club. The group would eventually welcome visiting survivors from as far away as Canada and the United Kingdom.

“He could tell that other survivors felt isolated, depressed and misunderstood, so he stepped in and lifted them in a way they couldn’t lift themselves,” Betty said.

Word began to spread, and soon Ellis started receiving invitations to help create clubs in New Jersey, New Mexico and Canada. By the mid-1970s, Ellis had inspired more than 100 stroke groups worldwide. To handle the demand, Ellis and Derrick formed Stroke Clubs International.

“Ellis was a grassroots hero,” said Dudley Hafner, chief executive officer of the American Heart Association from 1980 to 1997. “He was the catalyst and the inspiration for what is now the American Stroke Association and for any group in which stroke patients offer mutual support, which is so critical.”

World Stroke Day is Saturday, and AHA statistics show stroke is the No. 2 cause of death worldwide, killing more than 6 million people each year.

“I think that one of the most important aspects of Ellis’s leadership was that he focused on people’s abilities, not their disabilities,” said Betty. “He would tell survivors, ‘Instead of talking about what we can’t do, let’s talk about what we can do.’ ”

Ellis remained active with Stroke Clubs International until 2003, when complications from vascular dementia began to worsen. Ellis died last December at age 84.

“One of the things I will never forget about my father is that he routinely practiced gratefulness,” Chris said. “He was thankful for the opportunities that life continued to give him, and the chance to enjoy each new day.”