Alpha-1 Foundation Introduces AlphaDetect: A New Era in Disease Detection

In a significant advancement for patients suffering from Alpha-1 Antitrypsin Deficiency (AATD), the Alpha-1 Foundation (A1F) has unveiled a new initiative called AlphaDetect. This non-profit subsidiary aims to streamline and centralize the detection processes for individuals at risk of this genetic condition, which has historically seen a vast majority of cases remain undiagnosed.

Alpha-1 Antitrypsin Deficiency is an inherited disorder that can lead to severe lung and liver diseases. Despite substantial research and the development of clinical testing protocols over the years, an alarming 90% of affected individuals are still unaware of their condition. Delayed diagnosis can result in irremediable damage to key organs, highlighting the critical need for proactive detection strategies. Dr. James Stoller, a key figure in this initiative and Chairman of the Education Institute at Cleveland Clinic, addressed this pressing issue, stating, "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's Mission and Approach

AlphaDetect's mission is clear: to create a collaborative environment uniting patients, healthcare professionals, advocates, and industry partners to ensure comprehensive screening for Alpha-1, thereby eliminating the instances of undiagnosed cases. This initiative represents the first crucial step in an Alpha-1 patient’s journey, facilitating quicker diagnoses and enabling informed healthcare decisions.

Individuals like Jon Hagstrom, a member of the A1F Board, resonate with this mission. Sharing his personal experience, he expressed that while he received a diagnosis, the transient nature of his health was affected by the lateness of that moment. "I still would have only had 29% lung function and been unable to walk up a flight of stairs. The most underserved Alphas are those who do not know they have the disease," he noted.

To streamline diagnosis and promote awareness, AlphaDetect will focus on integrating Alpha-1 screening protocols into standard lung and liver care. They plan to offer free genetic testing for AATD through a proprietary laboratory dedicated to this purpose, ensuring that there are no financial barriers preventing patients from getting tested. Additionally, a confidential customer care team will be available on-site to handle inquiries from both providers and patients, with professional support from physicians specializing in AATD.

A Future Driven by Innovation and Collaboration

AlphaDetect seeks not only to change how detections are made but also to enhance the quality of innovations in healthcare. Through the establishment of an incubator space, they will foster research and pilot projects aligned with their mission of improving detection methodologies. Dr. Mark Brantly, an experienced Alpha-1 specialist, expressed his enthusiasm about the centralized approach: "Only through collaboration and innovation can we achieve the breakthrough in early detection that’s been needed for far too long."

Funding for AlphaDetect will come from a combination of support from the Alpha-1 Foundation, partnerships within the healthcare industry, and community-driven fundraising initiatives. The foundation has already received contributions from organizations like CSL, with others like Grifols and AlphaNet recognized for their ongoing commitment to enhancing detection and support for affected families.

A Skilled Leadership Team

AlphaDetect prides itself on having a leadership team brimming with relevant expertise and passion. Led by CEO Julie Murray, who has over two decades of experience in the healthcare sector, AlphaDetect is poised to make significant strides in the realm of Alpha-1 detection. Murray aims to harmonize the organization’s objectives with the foundational mission of A1F.

Supporting her are several key figures with extensive backgrounds in market operations and patient engagement. This cadre includes Danielle Holm, with her expertise in data analysis and operational management, and Larry Hinson, who specializes in provider engagement and educational program development. Together, they form a diverse team dedicated to the advancement of Alpha-1 awareness and detection strategies.

Looking Ahead

As the Alpha-1 community braces for what lies ahead, Julie Murray emphasizes the importance of collective efforts: "Alphas are hidden in plain sight. You have our commitment to accelerate and strengthen Alpha-1 detection through a unified and transformative approach. Each of us has a role in helping an Alpha find their answer and take their first step into this incredible community of support." The Alpha-1 Foundation remains anchored in Coral Gables, Florida, while their new subsidiary, AlphaDetect, will be established in Durham, North Carolina.

Stay tuned for further developments surrounding the launch of AlphaDetect, set to occur in mid-2026, as they strive to enhance the lives of individuals impacted by Alpha-1 Antitrypsin Deficiency. For additional information, please visit the Alpha-1 Foundation's official website.