Still Defending Off the Field

The Patient Perspective column epitomizes our mission to advance patient outcomes. Gaining insight into the patient-turned-advocate journey is vital because the patient voice is powerful. This story, while outside the realm of respiratory health, is an inspiring example of what can be accomplished when patients and clinicians work together to help others.

By Madeleine Burry
March 21, 2026 | VOLUME 4, ISSUE 1

A new opponent

Individuals with the hereditary form of this disease have a genetic mutation that causes buildup of abnormal protein, which accumulates in the heart, nervous system, and, potentially, kidneys.

ATTR-CM is considered a rare disease, but that’s perhaps an oversimplification. As Still noted, one of his doctors said it might be more accurate to say that it’s “rarely diagnosed.”

It can take time to recognize the cardiac and kidney problems, he said. While health care providers may not always have this disease on their radars, an estimated 1 in 25 Black people have the gene mutation (however, having this mutation doesn’t necessarily mean the disease will occur).¹

After discovering he had ATTR-CM, one of Still’s first thoughts was a natural one: “Why me?” But he quickly shifted from placing blame on the past to prioritizing his present and future, including his 11 kids and 26 grandchildren (and counting).

Since Still’s diagnosis, several of his children have also tested positive for the genetic mutation. “I’d prefer them not to have it, but if they do have it, it’s a good thing to catch it now,” he said. There are treatments available for ATTR-CM, although it is incurable and early detection is vital.

Changing the game plan

Advocacy comes naturally to Still.

That’s why, in 2025, he founded Still 4 Life, a nonprofit that raises awareness, promotes resources, and shares his story. The motto and goal of Still 4 Life is “Educate to activate.”

“My mother, she embedded in my head: [If] you see something wrong and you don’t do anything about telling [others], she said you’re just as guilty as whatever’s going wrong,” Still recalled. “We feel those are obligations, our responsibility, to get the information out.”

Still’s wife, Liz, said this framework astutely reflects her husband’s personality. “When he finds something that works for him, he tells everyone,” she said. “He always says, when you help others, you heal yourself.”

‘Educate to activate’

Talk to Still for a while about health matters and you’ll hear him repeat a phrase about his experience with health care and doctors: “That left a bad taste in my mouth.”

Case in point, when an orthopedic surgeon warned that there might be side effects following his shoulder surgery, he wondered whether the surgeon had maybe nicked something. Later on, when a doctor suggested genetic testing, Still said, “That was another trigger for me because I heard a lot of things growing up about genetic testing. I grew up in an environment [where] doctors, pharmaceutical companies, are negative things.”

Still has a large family (he’s one of 10 siblings) and their medical history is long, complex, and upsetting. “All my brothers have some type of illness, some more serious than others,” Still said. His mom died of heart disease, an older brother had back surgery that led to him becoming paralyzed as well as needing a heart transplant, and a nephew had sickle cell anemia and ATTR amyloidosis.

Looking broadly at the shameful history of the medical field toward Black communities, it’s no surprise that he was wary. So while his advocacy work is rooted in deep kindness and belief in helping others, it’s also paired with innate skepticism around medical care.

Still’s experience informs and personalizes his advocacy efforts. When he works in the community, he and his organization try not to use words with lots of syllables. “It can get a little intimidating,” he said.

Still is aware that certain words can be scary and overwhelming. He himself shied away from a doctor’s suggestion to get a nuclear test (an imaging test of the heart involving small amounts of radioactive material) because of the connotation of the word “nuclear.”

Through his nonprofit, Still is sharing his story along with advocacy resources, such as questions to ask a doctor following a diagnosis and a checklist of symptoms. What Still has uncovered through his own health care journey and his advocacy work, though, is that doctors—even great, renowned ones—have restrictions and limited control.

“The doctors, the health care system, pharmaceuticals, [they’re] almost like management,” Still said. Health care can only do so much, he noted.

But his role—increasing awareness about the disease, providing information, and making connections with people who may have ATTR-CM—is different.

“I’m the player on the field,” Still said, continuing to play defense—but this time, for his community.