Member Spotlight: Alpha-1 Foundation

By Katherine Scott, Senior Manager, Membership Services and Certifications

The Alpha-1 Foundation was founded in 1995 by John Walsh, Sandy Lindsey, and Susan Stanley, three people diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). All three founders have since passed away, but the legacy of their work and care for those with Alpha-1 lives on.

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition – it is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age.

The Foundation is critically supportive of researchers and encourages investigators to work on Alpha-1. They have 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. A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1.

The Alpha-1 Foundation is here to provide resources and information for their members on COVID-19 and the ways it impacts the patient community with a pulmonary condition. Please see their resources at this link.

The Foundation has been a longstanding member of the National Health Council and has been proud to offer leadership to the Board of Directors and working groups over the years.  The NHC has its finger on the pulse of health related not-for-profits and offers best practices, case studies, and forward-thinking solutions for our sector.  Because of their stellar reputation and excellence in public policy they offer an expert and reliable voice in Washington, DC.  Small to medium not-for-profits like the Alpha-1 Foundation are able to fight above our weight class due to our membership in the NHC.

To learn more about the Alpha-1 Foundation, go to their website. For more information about NHC membership, contact me.