Basic Organization Information
Alpha-One Foundation, Inc.
- Also Known As:
- Physical Address:
Coral Gables, FL
- Web URL:
- NTEE Category:
H Medical Research
H20 Birth Defects, Genetic Diseases Research
H Medical Research
H99 Other Medical Research N.E.C.
H Medical Research
- Ruling Year:
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.
Mr. John W. Walsh
Mr. Walsh is the co-founder, President and CEO of the Alpha-1 Foundation in Miami, FL. In 2002 Mr. Walsh's contribution to pioneering collaboration in orphan drug development was recognized by the FDA with the Commissioner's Special Citation. Mr. Walsh has an extensive background in busines management and government relations and regularly testifies before Congress and advisory groups as a patient advocate. Mr. Walsh serves on the following organizations:
Member of the NIH Director's Council of Public Representatives
Past Chairperson of the National Health Council's Board of Directors (2005-2006)
Past Chairperson of the American Thoracic Society Public Advisory Roundtable (PAR)
Presidential Appointee of the American Throacic Society's Board of Directors (2004-2005)
Trustee on the Foundation of the American Thoracic Society (2006-2008)
Completed his third term on the DHHS' Advisory Committee on Blood Safety and Availability (1997-2006)
Member of the Advisory Board of the Center for Genetic Research Ethics And Law (CGREAL) at Case Western Reserve University
Member of the US COPD Coalition Executive Committee
Past Chairperson of the International COPD Coalition (2006-2008)
Co-Founder and Member of the COPD Foundation Board of Directors and serves as President
Mr. Walsh was diagnosed with the rare genetic disorder, Alpha-1 Antitrypsin Deficiency, in 1989.
We are closer than ever to improved treatments and a cure. We can make a difference for our families and future generations. Your financial support can enormously impact the ability of the Foundation to fund meaningful research.
A significant investment in research is the most effective way to make progress toward improved treatments and a cure for Alpha-1. With the level of interest by the scientific community at an all-time high, the need for funds has never been stronger. All investments in Alpha-1 research will continue to build upon the positive momentum that has been created.
The need for the Alpha-1 Foundation to make funds available for innovative research projects is imperative. Many promising research projects are being under-funded by federal government sources, as the budget for the National Institutes of Health (NIH) has decreased for the first time in 40 years. In fact, many researchers who started projects years ago have had to abandon them due to lack of funds. The Alpha-1 Foundation is determined to see that this does not happen to promising Alpha-1 science.
Your investment is vital to achieving the Foundation’s mission: to provide 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 & CEO
Board of Directors
Highest Paid Employees & Their Compensation
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Impact Summary from the Nonprofit
Great strides have been made by the Alpha-1 Foundation to advance its mission on all fronts. We celebrated the passage of the Genetic Information Nondiscrimination Ace and worked to ensure that pulmonary rehabilitation will be provided to Medicare beneficiaries by supporting legislation. We spearheaded the effort to amend the 1986 Air Carrier Access Act to allow approved portable oxygen concentrators to be used as carry-on items by all airlines. We awarded a total of over $1.9 million in grant monies in peer-reviewed, matching and program grants including the Alpha-1 Coded Testing (ACT) Study and the Alpha-1 DNA and Tissue Bank. We initiated our first multi-center clinical study, entitled, "Targeted Detection of Alpha-1 Antitrypsin Deficiency in Patients Referred for Pulmonary Function Testing." The Gordon L. Snider Critical Issues Workshop "Quantitative Chest Tomography in COPD Research," brought experts from around the world to assist the research community in its efforts to standardize the technique for research and ultimately provide the best care for patients suffering from this condition.
The Foundation is committed to focusing on the most productive areas of research and to fast-tracking the most promising research into viable therapies. This approach is the most effective means of achieving a more complete understanding of the factors leading to disease and to identifying the most viable therapeutic interventions. A major focus is being placed on the establishment of multi-year research initiatives to expand the Foundation's grant making capacity with the goal of funding all meritorious research projects and stimulating new avenues of research. With the continued investment of research dollars we will see Alpha-1 become a disease of the past.