JOHN W. "JW" WALSH IV

1949 - 2017

WALSH, John W., IV "JW" Patient, innovator and visionary in the voluntary health sector, passes John W. 'JW' Walsh, IV of Miami, FL, passed peacefully on March 7, 2017, surrounded by his loving family. He was born on February 4, 1949, to the late Helen Chase Walsh and John W. Walsh, III. He is survived by his devoted wife, Diane, daughter Linda, and granddaughter, Lily. Also surviving are his twin brother Fred Chase Walsh and sisters Susan Walsh Ferro and Judith "Juba" Morton Walsh. They, along with an extended family of cousins, nieces, a nephew, their families, and many others will miss John's warmth, compassion, and spirit of life. John leaves behind an extraordinary legacy of civic service, advocacy and philanthropy. John's service to his community and country began in Eagle Scouts in Arlington, Massachusetts. It continued through his graduation from Arlington High School, New Hampton School, and his years at Norwich University. John became a Staff Assistant to the U.S. Senate, and served in the U.S. Army Special Forces Reserve. He went on to have a distinguished career in business where he created and served as chief executive officer for AMSTOR and Hometron and excelled in real estate development. Then, his life changed. In 1989, John was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1), a genetic condition affecting the lungs and/or liver. Lung disease resulting from Alpha-1 took his mother at the age of 48. It also affects his sister, Susan, and twin brother, Fred - now a recipient of a double lung transplant due to Alpha-1. John's entrepreneurial spirit, and his commitment to community service, combined to set the stage for a patient centered and visionary approach in the voluntary health sector that will likely remain unmatched. After discovering how little was known about Alpha-1, and that minimal research was being conducted, John co-founded the Alpha-1 Foundation in 1995. The Alpha-1 Foundation is a not-for-profit organization whose mission is to find a cure for Alpha-1 and improve the lives of those affected by Alpha-1 worldwide. Later that year, he co-founded AlphaNet, a not-for-profit organization providing health management services to individuals with Alpha-1. AlphaNet utilizes a unique model that to date has contributed $50 million dollars into Alpha-1 research and related programs. As John created relationships with patients, physicians and researchers, it was clear that Alpha-1 remained largely undiagnosed or misdiagnosed as common chronic obstructive pulmonary disease (COPD). COPD is a chronic and progressive lung condition characterized by increasing breathlessness, and currently the third leading cause of death in the United States. Unsettled by the discovery, John committed to diagnosing Alpha-1 patients in the COPD community. He quickly recognized that COPD was misunderstood, misdiagnosed, mistreated, underfunded and lacked adequate research. In response to the critical unmet need by the millions of patients with COPD in the U.S., and millions more who remain undiagnosed, Walsh formed the COPD Foundation in 2004. The COPD Foundation is a not-for-profit organization, whose mission is to prevent and cure chronic obstructive pulmonary disease, and to improve the lives of all people affected by COPD. John was an internationally recognized advocate, and was celebrated for his willingness to share his innovative strategies for Alpha-1 and COPD with rare and common disease communities alike. Often referring to himself as the "impatient patient", John's call to action was to educate, engage and empower. His contributions to empowerment of patients are unprecedented. His voice changed the way research studies are designed and executed, the way industry views the patient voice, and even changed the way patients are integrated into medical education. John's awards and accolades are abundant. He consistently raised up the patients, healthcare professionals, researchers, and his loving family as being his source of strength and motivation. A few of his numerous recognitions follow: •American Thoracic Society's Public Service Award •COPD Foundation's Inaugural Visionary Award •COPD Hall of Fame 2012 Inductee •Chairman of the National Health Council •Member of the National Institutes of Health's Council of Councils •National Institutes of Health Council of Patient Representative (COPR) •National Organization for Rare Disorders'(NORD) Lifetime Achievement Award •Member of the U.S. Department of Health and Human Services Advisory Committee on Blood Safety and Availability John forged a patient-centered movement that brought together patients, physicians, researchers, federal agencies, and pharmaceutical companies. The result of this continued collaboration has increased the longevity and the quality of life for those affected by Alpha-1. John was a family man and a hero to many and left us all with his common wish, "Keep the faith". In lieu of flowers, donations may be made to the following funds: The John W. Walsh Research Fund, at the Alpha-1 Foundation (http://a1f.org/JWW-Memorials or 1-877-228-7321, extension 204) or The JW Walsh Fund to Cure COPD, at the COPD Foundation (copdf.co/RememberingJohn or 1-866-731-2673, extension 456) Those who would like to celebrate John's legacy will find calendars on www.alpha1.org and www.copdfoundation.org detailing memorial events in the community.

View the online memorial for John W., IV "JW" WALSH