About Us
What is the Alpha-1 Foundation?
The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Susan Stanley and Sandy Lindsey, three individuals diagnosed with Alpha-1 Antitrypsin Deficiency (AAT Deficiency or Alpha-1). The Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1. The majority of the Board of Directors are either diagnosed with Alpha-1 or have a family member diagnosed with Alpha-1.
The Foundation has realized continuous growth since its inception and has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with AAT Deficiency. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), individuals affected with AAT Deficiency, and the pharmaceutical industry to expedite the development of improved therapies, including aerosol delivery for augmentation therapy.
The Alpha-1 Foundation participates in industry and government liaison groups and participates in strategic alliances with government, industry and other national and international health and research organizations.
Mission Statement
The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency.
John W. Walsh, President and CEO, Biography
John W. Walsh was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) in 1989. Learning there was no organized effort to promote research and find a cure for the disorder, he decided to dedicate his life’s work to this end. In 1995 he co-founded the Alpha-1 Foundation, a not-for-profit corporation dedicated to providing the leadership and resources to increase research, improve health, promote worldwide detection, and find a cure for Alpha-1.
Walsh’s leadership and passion towards his life’s work has helped shape the Alpha-1 Foundation into a successful organization. Since its inception, the Alpha-1 Foundation has invested more than $35 million to support Alpha-1 research and research-related projects, which includes funding grant awards to nearly 70 academic institutions in North America and Europe. Additionally, the Foundation has established a broad range of activities and programs including the Alpha-1 Research Registry, the Alpha-1 DNA & Tissue Bank, the Alpha-1 Research Network, International Scientific Conferences, and the Gordon L. Snider Critical Issues Workshop Series.
Walsh is committed to serving the Alpha-1 Community in all his endeavors. He is co-founder of AlphaNet, a not-for-profit disease management services company providing comprehensive care exclusively for individuals with Alpha-1, where he serves as President. AlphaNet provides healthcare services to 2,500 individuals with Alpha-1 in all 50 states, Puerto Rico and the Virgin Islands. All excess revenues over expenses generated by AlphaNet are donated to the Alpha-1 Foundation to support the research mission. AlphaNet has so far contributed more than $20 million to the Alpha-1 Foundation.
Walsh serves as an active member of various voluntary health agency committees and governmental advisory committees. He served three terms on the Advisory Committee on Blood Safety and Availability (1997-2006). He is Immediate-Past Chairperson of the Board of Directors of the National Health Council (2005-2006). He is Past Chair of the American Thoracic Society Public Advisory Roundtable (PAR), was the Presidential Appointee of the Board of Directors of the American Thoracic Society (2004-2005) and is currently a Trustee on the Foundation of the American Thoracic Society (2006-2008). Mr. Walsh is co-founder of the Plasma Users Coalition, is a member of the American Lung Association National Action Panel on Lung Disease, is on the Advisory Board of the Center for Genetic Research Ethics And Law (CGREAL) at Case Western Reserve University, serves on the Executive Committee of the US COPD Coalition, is Chairman of the International COPD Coalition (2006-2008) co-founder and member of the COPD Foundation Board of Directors and serves as its President.
Walsh is a continuous advocate for Alpha-1. He was a member of the Alpha-1 Antitrypsin Deficiency Task Force that published the American Thoracic Society / European Respiratory Society Statement: Standards for the Diagnosis and Management of Individuals with Alpha-1 Antitrypsin Deficiency. He was awarded the FDA’s highest recognition for his “outstanding personal commitment and contribution to improving the quality and accessibility of healthcare to his fellowmen”, the Commissioner’s Special Citation for aiding process of drug development, received the University of Florida’s Distinguished Achievement Award for “his many years of outstanding and distinguished contributions to humanity, the medical profession, the nation, state, community and the University of Florida”, and was awarded the Health Foundation of South Florida’s 2005 Concern Award along with a monetary grant to the Alpha-1 Foundation. Mr. Walsh was also awarded the prestigious Claude Pepper Memorial Award for Healthcare for his outstanding achievements and contributions to the healthcare industry and was awarded the 2006 Dr. Charles H. Hudson Award for Cardiopulmonary Public Health by the American Respiratory Care Foundation.
Walsh and his wife Diane live in Coconut Grove, Florida and have a daughter who resides in Coral Gables. He has two sisters and a twin brother, of whom one sister and brother were also diagnosed with Alpha-1.
PUBLISHED RESEARCH PAPERS:
1. Sharp RR, De Serres F, Newman L, Sandhaus RA, Walsh JW, Hood E, Harry GJ: Environmental Occupational, and Genetic Risk Factors for alpha-1 Antitrypsin Deficiency. Environmental Health Perspective 2003; 111(14): 1749-52.
2. (2003). “American Thoracic Society / European Respiratory Society Statement: Standards for the Diagnosis and Management of Individuals with Alpha-1 Antitrypsin Deficiency. The Alpha-1 Antitrypsin Deficiency Task Force.” American Journal of Respiratory and Critical Care Medicine 168(7): 818-900.
3. Stoller, JK, Brantly M, Fleming LE, Bean JA, Walsh J: Formation and Current Results of a Patient-Organized Registry for Alpha-1 Antitrypsin Deficiency. CHEST 2000, 118:843-848.
