John W. Walsh

[1] When John was 13 his mother died from chronic obstructive pulmonary disease, likely caused by undiagnosed alpha-1 antitrypsin deficiency (alpha-1), at age 46.

[1][4][5][6] Prior to his diagnosis with alpha-1, he had a successful career in real estate, including founding and leading two companies, AMSTOR and Hometron.

[2][6] John and his brother joined the Longitudinal Progressive Disease Study, administered by the National Institutes of Health, which ran through 1995 and ended in the development of a protein replacement therapy treatment.

[2][6][7] Following the conclusion of the study, Walsh and two other alpha-1 patients – Susan Stanley and Sandy Linsey – founded the Alpha-1 Foundation, a research focused non-profit.

In 2004 Walsh co-founded the COPD Foundation, a research, education, and advocacy non-profit serving individuals with chronic obstructive pulmonary disease.

[1][4] Representing the COPD Foundation, John and other non-profit leaders developed the first patient-powered research networks, an initiative funded by the Patient Protection and Affordable Care Act.

[10]:477 In 2007 he and the executive director of the American Association for Respiratory Care appeared before Congress to request that Medicare cover pulmonary rehabilitation.