Alpha-1 Foundation Launches Innovative New Model for Centralized Detection

CORAL GABLES, Fla., Aug. 20, 2025 /PRNewswire/ -- The Alpha-1 Foundation (A1F) is excited to announce the formation of AlphaDetect, a new non-profit subsidiary of A1F, to lead a centralized effort to identify individuals with Alpha-1 Antitrypsin Deficiency (Alpha-1 or AATD).

Alpha-1 is a genetically inherited condition that significantly increases the risk of developing pulmonary emphysema in adults and/or liver disease in both children and adults. Despite decades of research and the development of numerous clinical testing guidelines, over 90% of individuals with Alpha-1 remain undiagnosed. Research continues to underscore the dangers of delayed diagnosis, including irreversible damage to the lungs and liver, and adverse impacts on survival. Dr. James Stoller, Chairman of the Education Institute at Cleveland Clinic and AlphaDetect Board Chair, has shared, "Although past detection efforts have made progress, they have not meaningfully changed the trajectory of Alpha-1 Antitrypsin Deficiency detection. The stubbornly persistent under-detection of Alpha-1 over the past 30 years underscores the urgent need for a more effective and sustainable approach."

AlphaDetect, powered by the Alpha-1 Foundation, will lead a transformative initiative that unifies community stakeholders, including patients, healthcare providers, advocates, and industry partners, all with a collective common purpose: to ensure no Alpha-1 patient is left undetected. After years of questions, receiving a diagnosis is the first step in an Alpha-1 patient's journey. Detection accelerates answers and informs decisions. Jon Hagstrom, A1F's Board Chair, reflects on his own personal story, "As an Alpha-1 patient, having a cure at the time I was diagnosed would not have changed my outcome. I still would have only had 29% lung function and been unable to walk up a flight of stairs. The most underserved Alphas are the ones who don't know they have the disease."

AlphaDetect's focus is to standardize and integrate Alpha-1 screening into lung and liver care, as well as empower patients to find their own answers. AlphaDetect will offer free genetic testing for AATD, performed in a proprietary AlphaDetect laboratory, at no cost to patients or insurance.

AlphaDetect will have an on-site, dedicated, confidential customer care team to answer provider and/or patient inquiries regarding testing, test kit status, and results. A physician with expertise in AATD will also be on call to address clinical or scientific questions from testing healthcare providers. To evolve detection innovation for both lung and liver, an incubator space will be available for mission-aligned Alpha-1 research and detection-related innovation pilots. Dr. Mark Brantly, an Alpha-1 specialist with years of experience running his own Alpha-1 testing lab, shares the excitement of the Foundation, "A more uniform and consistent approach is essential, and I'm thrilled to see the Alpha-1 community uniting around centralized detection. Only through collaboration and innovation can we achieve the breakthrough in early detection that's been needed for far too long."

AlphaDetect will be funded by the Alpha-1 Foundation, industry partners, and community fundraising. We are grateful to CSL for our first contribution. Also, thank you to Grifols and AlphaNet for their long-standing detection programs and family testing efforts, and to the many patients, healthcare professionals, advocates, and other stakeholders who have worked tirelessly to advance AATD Detection. Your efforts have set the stage for what's next.

AlphaDetect will be led by an experienced, dedicated team with deep roots in rare disease, detection strategy, and the Alpha-1 community:

• Julie Murray, CEO, with 20+ years of U.S. and Global industry, strategy, and business development leadership, will translate rare disease experience and multi-disciplinary detection approaches into organizational leadership for AlphaDetect. She will also closely align AlphaDetect with A1F's mission.
• Danielle Holm, Sr. Director, Operations, with 15+ years in market research, data analysis, and business operations, will focus on building partnerships, collaborations, and tools that create new avenues for detection and detection-related technologies.
• Larry Hinson, National Director, Provider Engagement, with 20+ years in rare disease provider engagement, market development, and commercial leadership, will build and lead the engagement team to advance educational programs, which will accelerate our national detection strategy.

AlphaDetect will also benefit from the expert guidance of its Board of Directors, including:

• James Stoller, MD, MS, AlphaDetect Board Chair, Chairman of the Education Institute, and Senior Associate Dean for Academic Affairs at the Cleveland Clinic
• Mark Brantly, MD, Emeritus Professor of Medicine, University of Florida
• Scott Santarella, President & CEO, Alpha-1 Foundation
• Jon Hagstrom, Chair, Alpha-1 Foundation Board of Directors
• Julie Murray, CEO, AlphaDetect
• David Brenner, MD, President & CEO Sanford Burnham Prebys Medical Discovery Institute
• David Lomas, MD, PhD, Professor of Medicine, University College of London
• Sutton Faller, MBA, Chief Administrative Officer & Board Secretary, Cairn Therapeutics, Inc.
• Gerald Mosely, PhD, Founder & President, CP&P Development, LLC

As we look ahead, Julie Murray has shared, "Alphas are hidden in plain sight. You have our commitment to accelerate and strengthen Alpha-1 detection through a unified and transformative approach. Please continue to share your thoughts and ideas; we are stronger together. Each of us has a role in helping an Alpha find their answer and take their first step into this incredible community of support."

A1F is looking forward to engaging and connecting across the Alpha-1 Community, in collaboration with AlphaDetect, to continue to improve the lives of those affected by Alpha-1. The Alpha-1 Foundation will continue to be based in Coral Gables, Florida; AlphaDetect will be based in Durham, NC.  Stay tuned for additional updates on AlphaDetect's launch, planned for mid-2026.

For more information, visit our website: Alpha-1 Foundation Launches Innovative New Model for Centralized Detection

About AlphaDetect
AlphaDetect, founded in 2025, is committed to uncovering anyone with Alpha-1 Antitrypsin Deficiency (Alpha-1). Located in Durham, NC, AlphaDetect will operate as a limited liability company and wholly owned non-profit charitable subsidiary of A1F, deriving tax-exempt status under Section 501(c)3 of the Internal Revenue Code.

About the Alpha-1 Foundation
The Alpha-1 Foundation, founded in 1995 and located in Coral Gables, FL, is a 501(c)(3) charity 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 alpha1.org 

Contact: Jeanne Kushner
Senior Director of Communications & Policy
877-228-7321
[email protected]

SOURCE Alpha-1 Foundation