CORAL GABLES, Fla., Feb. 3, 2025 /PRNewswire/ -- The Alpha-1 Foundation (A1F) is proud to commemorate its 30th anniversary of supporting patients with Alpha-1 Antitrypsin Deficiency (Alpha-1) while searching for a cure. On January 31, 1995, A1F was incorporated as a not-for-profit organization by its three Alpha-1 patient co-founders, John W. Walsh, Sandy Lindsey, and Susan Stanley, to find a cure for Alpha-1. This milestone celebrates and honors the legacy of those who have impacted the Alpha-1 community over three decades, especially Alphas and their families who A1F serves.
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a rare genetic (inherited) condition— 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.
A1F was created because the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH) was nearing the conclusion of its seven-year study on Alpha-1 and leading Alpha-1 advocate John W. Walsh recognized that no further resources would be put towards Alpha-1 research. It became clear future research and the hope for a cure would depend on Alpha-1 patients taking the lead in building the resources and infrastructure needed to drive progress and advance the field to find a cure for this debilitating condition.
"A1F has spent 30 years working for the Alpha-1 community, to improve the lives of Alphas and to find a cure for Alpha-1. It has invested over $100 million in Alpha-1 research at 130 institutions around the world, spurring countless innovations and impacts. Together, we are creating a legacy of hope, possibility, and progress; one that will resonate for generations to come," said Scott Santarella, President & CEO of the Alpha-1 Foundation.
For three decades, with the insight of the Alpha-1 community, A1F has designed and launched innovative, patient-focused programs and services supporting Alphas along their journey; including investing in a solid infrastructure to promote pioneering scientific research, and the establishment of collaborative partnerships to advance the development of novel therapies. The impact of A1F's work over 30 years has exponentially improved the quality of life for those affected by Alpha-1.
"As an Alpha-1 patient, it is truly an exciting time celebrating the milestones and achievements of this outstanding organization and recognizing the last 30 years. We are fortunate to have the best research and therapeutic development landscape ever seen and A1F is well-positioned to accelerate that even further," said Jon Hagstrom, Chair of the A1F Board of Directors.
A1F has been committed to finding a cure for Alpha-1 while improving the lives of those affected worldwide since inception. In pursuit of this mission, A1F has devoted substantial resources to addressing the social and scientific challenges of Alpha-1. The founders set out to establish an innovative scientific infrastructure that would support a powerful grant program aimed at investing in evidenced-based research to find a cure for Alpha-1.
A unique and innovative aspect of A1F is that it started and has continued to be a patient-driven and directed organization; most of the A1F Board of Directors are either diagnosed with Alpha-1 or have a family member diagnosed with Alpha-1.
With the help of the Alpha-1 community, A1F has designed and launched patient-centric educational programs and 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 North America, Europe, the Middle East, and Australia, working closely with the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), the pharmaceutical industry, and Alpha-1 patients to expedite development of improved treatments.
A1F's achievements in its first 30 years can be attributed to the ability to bring all constituents and stakeholders to the table with a patient-focused approach to accelerate novel approaches to this condition.
Recognized for good operating practices, accountability, and responsible governance, A1F has received the National Health Council's Full Compliance Certification and the Charity Seal from the Better Business Bureau's Wise Giving Alliance. These are the highest accreditations attainable in the not-for-profit and voluntary health sectors. A1F has also received an Exceptional 4-Star rating by Charity Navigator, the highest rating given by that organization. GuideStar has also awarded the Platinum Seal of Transparency, their highest level of recognition, to A1F.
About the Alpha-1 Foundation
The Alpha-1 Foundation, founded in 1995, is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by the condition worldwide. A1F has invested over $100 million to support Alpha-1 research and programs at 130 institutions in North America, Europe, the Middle East and Australia.
For more information, visit www.alpha1.org
Contact: Jeanne Kushner
Senior Director of Communications & Policy
877-228-7321
SOURCE Alpha-1 Foundation
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