About the Foundation

Our Mission

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.

Our History

The Alpha-1 Foundation is a not-for-profit organization based in Florida. The Foundation was founded in 1995 by John Walsh, Sandy Lindsey, and Susan Stanley, three people diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). The three founders have since passed away, with Susan Stanley passing in 2000, Sandy Lindsey passing in 2002, and John Walsh passing in 2017.

A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1. 

Our Programs and Services

The Alpha-1 Foundation offers many programs and services to people living with Alpha-1, their friends and families, Alpha-1 carriers, healthcare providers treating patients with Alpha-1, and researchers working on a cure for Alpha-1. We provide extensive information on Alpha-1 testing, diagnosis, symptoms, and treatment. We also offer a support line, genetic counseling program, and peer guide program for those who have been affected by Alpha-1. 


The Alpha-1 Foundation is deeply committed to finding the best possible ways to understand, detect, treat, and cure Alpha-1. To date, the Foundation has invested $92 million to support Alpha-1 Antitrypsin Deficiency research and programs at 128 institutions in North America, Europe, the Middle East and Australia.

The Foundation plays an active role in promoting Alpha-1 research and developing new therapies to treat people with Alpha-1, fostering collaborations with investigators throughout the United States and Europe. The Foundation works closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), people affected by Alpha-1, and the pharmaceutical industry to develop new and improved therapies to treat Alpha-1 and its symptoms.


The Alpha-1 Foundation participates in industry and government liaison groups and develops strategic alliances with government, industry, and other national and international health and research organizations to advocate on behalf of people with Alpha-1.

Take a look at our 2023 Programs Report