About Us

Alpha-1 Foundation founders: Susan Stanley, Sandy Lindsey, John Walsh

What is the Alpha-1 Foundation?

Our 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.

The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1.

The Foundation has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. 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 by Alpha-1, and the pharmaceutical industry to expedite the development of improved therapies.

The Foundation participates in industry and government liaison groups and develops strategic alliances with government, industry and other national and international health and research organizations.

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.

John W. Walsh, President and CEO, Alpha-1 Foundation

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 $50 million to support Alpha-1 research and research-related projects, which includes funding grant awards to 97 academic institutions in North America, Europe, Australia and the Middle East. 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 over 3,000 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 $38 million to the Alpha-1 Foundation.

Walsh serves as an active member of various voluntary health agency committees and governmental advisory committees. He is a former member of the NIH Director’s Council of Public Representatives, is on the NIH’s Council of Councils and is a member of the National Diabetes and Digestive and Kidney Diseases (NIDDK) Advisory Council.  He is also chair of the US COPD Coalition Board of Directors,  Past-Chair of the International COPD Coalition (2006-2008), Past Chair (2005-2006) of the National Health Council’s Board of Directors and is currently a board member, Past Chair and former member of the American Thoracic Society Public Advisory Roundtable (PAR), was the Presidential Appointee (2004-2005) of the American Thoracic Society’s Board of Directors and a Trustee of the Foundation of the American Thoracic Society (2006-2008).

Mr. Walsh is co-founder of the Plasma Users Coalition, was on the Advisory Board of the Center for Genetic Research Ethics and Law (CGREAL) at Case Western Reserve University. Walsh is also Co-Founder and President of the COPD Foundation, as well as member of the COPD Foundation Board of Directors.

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.  In 2002 he was awarded the FDA’s highest recognition for his “pioneering collaboration in orphan drug development”, the Commissioner’s Special Citation, 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, was awarded the 2006 Dr. Charles H. Hudson Award for Cardiopulmonary Public Health by the American Respiratory Care Foundation and was the recipient of the American Thoracic Society’s 2008 Public Service Award and received a Presidential Commendation from the Society’s president. In 2012, Mr. Walsh was inducted into the COPD Hall of Fame at an awards ceremony in the United Kingdom.

Walsh and his wife Diane live in Coconut Grove, Florida and have a daughter who also resides in Coconut Grove.  He has two sisters and a twin brother, of whom one sister and brother were also diagnosed with Alpha-1.

PUBLISHED RESEARCH PAPERS:

  1. Gregory D Salinas1, James C Williamson1, Ravi Kalhan2, Byron Thomashow3, Jodi L Scheckermann4,John Walsh5, MaziarAbdolrasulnia1, Jill A Foster1,1CE Outcomes, LLC Birmingham, AL, USA; 2Asthma-COPD Program, Division of Pulmonary and Critical Care Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; 3Division of Pulmonary, Allergy, Critical Care, Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, NY, USA; 4Boehringer-Ingelheim Pharmaceuticals, Inc., Ridgefield, CT, USA; 5COPD Foundation, Miami, FL, USA: Barriers to Adherence to Chronic Obstructive Pulmonary Disease Guidelines by Primary Care Physicians. International Journal of Chronic Obstructive Pulmonary Disease. February 2011, 171-179
  2. 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.
  3. (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.
  4. 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.
  5. Steven B. Nelson, Lisa M. LaVange, Yonghong Nie, John W. Walsh, Paul L. Enright, Fernando J. Martinez, David M. Mannino, Byron M. Thomashow: Questionnaires and Pocket Spirometers Provide an Alternative Approach for COPD Screening in the General Population: CHEST 2012;142(2): doi:10.1378/chest.11-1474