The millions of Americans suffering from chronic obstructive pulmonary disease and the genetic form called Antitrypsin Deficiency (Alpha-1) have lost a key ally in the fight to bring awareness and find a cure for the deadly lung disease.
Businessman John Walsh, co-founder of the COPD Foundation and the Alpha-1 Foundation and AlphaNet, died Wednesday as the result of injuries he suffered in a fall more than a year ago on an icy street in Washington. He was 68.
“John was, in fact, a super achiever and a legend in the world of COPD and the genetic form called Alpha-1,” said Bob Campbell, Alpha-1 communications director.
“An absolute legend in the field of patient advocacy,” Mark Boutin, CEO of the National Health Council, said in a statement.
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In 1989, Walsh was a member of a small group of people — less than 5,000 at the time — who had been diagnosed with Alpha-1, a genetic condition that had caused the COPD that plagued not only Walsh, but his twin brother Fred, sister Susan, and their mother, who died at 46 from the disease.
COPD has been diagnosed in at least 12 million people in the United States and is the third most common cause of death in the country, according to the American Lung Association. Although it is often called a “smoker’s disease,” many people who have COPD never smoked. There is no cure.
Alpha-1 is a complicated situation. John Walsh was not. He was a gentleman who changed the lives of many.
Marketing consultant Hilda Mitrani.
In people with the Alpha-1 deficiency, the liver traps and destroys most, or all, of the proteins that the body makes to protect the lungs from irritants like cigarette smoke, air pollution and infections. Alpha-1, which can also cause liver damage, is the most common known genetic risk factor for COPD and is passed from one abnormal gene from each parent.
Of the 12 million people diagnosed with COPD, up to 3 percent of them may have Alpha-1, according to the Alpha-1 Foundation.
Little was known by the public or medical community when Walsh, who never smoked, and his brother, who smoked, sought treatment for their shared symptoms — severe allergies, shortness of breath and respiratory problems. The National Institutes of Health confirmed the Walshes’ diagnosis in 1989 and the pair joined the agency’s study on Alpha-1.
When the NIH study ended in 1995, the NIH developed a protein therapy. Walsh, born in Arlington, Massachusetts, had been living in Miami for two years for its climate. While attending a support group in West Palm Beach, he raised money to produce a CD that provided information on Alpha-1.
He was determined to do more. That same year, Walsh and two fellow Alphas, as they called themselves, Susan Stanley and Sandy Linsey, created the Alpha-1 Foundation in Coconut Grove, followed by AlphaNet, a disease and health management company that provides services for people with the deficiency.
The nonprofits quickly flourished with grants, matching funds, advocacy and influence, leading to research centers nationwide, including at Harvard, a gene therapy program for the lung and liver at University of Florida and University of California at San Diego, and an Alpha-1 registry at the Medical University at South Carolina. The nonprofits also have raised millions for research.
“Our mission is to put ourselves out of business,” Walsh told the Miami Herald in 2005. “We want to cure Alpha-1.”
Here was a man who was going to make big changes in the way the world thought about COPD and in my life as a patient. He was determined to draw attention to the disease, to erase the stigma of being diagnosed, to encourage patients to become active and to become involved in research.
Karen Deitemeyer’s post on the COPD Foundation website.
A year earlier, in 2004, Walsh had the same mission when he co-founded and became the first president of the COPD Foundation in Coconut Grove, with a second office in Washington. He followed with the COPD Advocacy program and the Congressional COPD Caucus to push for more funding for research and patient access. In 2014, Walsh, who lived in Coral Gables, was elected to the National Health Council’s board of directors.
“John was a former Army Ranger. Though he was afraid of heights, he volunteered for Airborne School and became a paratrooper, because parachute jumping out of planes is a required skill for a ranger. That should tell you a lot about the strength of his character, will and commitment to mission,” said Marcia Ritchie, the Alpha-1 Foundation’s chief operating officer.
“John had that astonishing power that people get when they have high energy and passion for something and a willingness to devote their life to it,” Campbell said. “He was starting from a tiny patient base. He had no power base. Started with little funding. But he built the core organization of the Alpha-1 world and then the core foundation of the COPD world. That’s an astonishing number of achievements in a little over 20 years.”
Walsh is survived by his wife Diane, daughter Linda, granddaughter Lily, his brother Fred, and sisters Susan Ferro and Judy Walsh. The family plans a private celebration of life.