What is the Alpha-1 Foundation?
The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide.
The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three people 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 three founders have since passed away, Susan Stanley in 2000, Sandy Lindsey in 2002, and Walsh on March 7, 2017.
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), people affected by Alpha-1 and the pharmaceutical industry to expedite the development of improved therapies.
The Foundation has invested $76 million to support Alpha-1 Antitrypsin Deficiency research and programs at 116 institutions in North America, Europe, the Middle East and Australia.
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, Co-founder, Biography
John W. Walsh was diagnosed with Alpha-1 in 1989. Learning there was no organized effort to promote research and find a cure for the genetic disorder, he decided to dedicate his life’s work to this end. In 1995 he co-founded the Alpha-1 Foundation.
Walsh’s leadership and passion helped to shape the Alpha-1 Foundation into a successful organization. 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 was also co-founder of AlphaNet, a not-for-profit disease management services company providing comprehensive care exclusively for people with Alpha-1. AlphaNet provides healthcare services to more than 6,000 Alphas 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 $50 million to the Alpha-1 Foundation.
Walsh served on many voluntary health agency committees and governmental advisory committees. He was a former member of the NIH Director’s Council of Public Representatives, the NIH’s Council of Councils and a member of the National Diabetes and Digestive and Kidney Diseases (NIDDK) Advisory Council. He was also chair of the US COPD Coalition Board of Directors, Past-Chair of the International COPD Coalition, Past Chair of the National Health Council’s Board of Directors and a board member, Past Chair and former member of the American Thoracic Society Public Advisory Roundtable (PAR). He was the Presidential Appointee of the American Thoracic Society’s Board of Directors in 2004-05 and a Trustee of the Foundation of the American Thoracic Society in 2006-2008.
Walsh was a co-founder of the Plasma Users Coalition and was on the Advisory Board of the Center for Genetic Research Ethics and Law (CGREAL) at Case Western Reserve University. Walsh was also Co-Founder of the COPD Foundation and a member of the COPD Foundation Board of Directors.
Walsh was a member of the Alpha-1 Antitrypsin Deficiency Task Force that in 2003 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 Commissioner’s Special Citation, the FDA’s highest recognition for his “pioneering collaboration in orphan drug development,” and 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.” He was awarded the Health Foundation of South Florida’s 2005 Concern Award along with a monetary grant to the Alpha-1 Foundation. Walsh also received the Claude Pepper Memorial Award for Healthcare for his outstanding achievements and contributions to the healthcare industry; the 2006 Dr. Charles H. Hudson Award for Cardiopulmonary Public Health by the American Respiratory Care Foundation; and the American Thoracic Society’s 2008 Public Service Award, plus a Presidential Commendation from the Society’s president. In 2012, he was inducted into the COPD Hall of Fame at an awards ceremony in the United Kingdom.
Walsh passed away March 7, 2017. His wife Diane, their daughter Linda and granddaughter Lily all live in Coconut Grove, Florida. He also leaves two sisters and a twin brother, of whom one sister and brother were also diagnosed with Alpha-1.
PUBLISHED RESEARCH PAPERS:
- 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
- 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.
- (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.
- 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.
- 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