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 since 1995.
On January 31, 1995, A1F was incorporated as a not-for-profit organization by 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.
“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 A1F.
This year, A1F shares a vision framed by four powerful words that define its work: Insight, Innovation, Investment, and Impact. The A1F 30th Anniversary Seal, shown above, builds on and complements the strong A1F brand. The core square shape of the seal symbolizes the cornerstone that A1F is for the entire Alpha-1 community. The soft glow at the center emanates outward toward the future, shining on you, the Alpha-1 patient and essential members of the Alpha-1 community, helping A1F achieve its mission to find a cure for Alpha-1 and improve the lives of people affected by Alpha-1 worldwide.
“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 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.
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.
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.
INSIGHT: Discovery begins with questions, and insight drives the path toward answers. Over the years, A1F driven research has deepened the understanding of Alpha-1, shedding light on critical pathways and unlocking doors to new possibilities. A1F has expanded its knowledge base significantly building a stronger foundation for the next steps in Alpha-1 research. With each step forward, A1F gains insight that propels the Alpha-1 community closer to lasting solutions.
INNOVATION: A1F is known for tackling challenges with bold, innovative solutions and innovation is the heart of progress. From pioneering studies on Alpha-1 to cutting-edge trials, the team constantly seeks novel solutions that push boundaries and challenge the status quo. A1F has expanded the Therapeutic Development Network (TDN), bringing the Alpha-1 community closer to creating new, accessible treatments and life-changing outcomes. A1F’s innovative approach to clinical trial recruitment, utilizing the Alpha-1 Research Registry to prioritize individuals who are willing and able to take part in clinical studies to move impactful research forward.
INVESTMENT: A1F’s progress has been fueled by the investment of its supporters; people that believe in the transformative power of philanthropy. Continued investment in A1F is critical to sustain the organization’s expanded efforts, allowing A1F to engage new scientists, fund innovative studies, provide education and support to the Alpha-1 community, and provide hope for countless families.
IMPACT: Your continued support resonates through every breakthrough A1F achieves and the life of every Alpha A1F touches. Together, we are creating a legacy of hope, possibility, and progress; one that will resonate for generations to come.
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.
A1F is excited to share a special 30th Anniversary Commemorative Edition of the Alpha-1-to-One Magazine this winter. This edition highlights the milestones and achievements of this outstanding organization and recognizes the last 30 years of Insight, Innovation, Investment and Impact, as the mission continues toward a cure for Alpha-1.
I was diagnosed with Alpha-1 in 2015 through a routine blood test. Like many, I had never heard of Alpha-1 before my diagnosis. Since then, I have been on a weekly infusion treatment, which I will need for the rest of my life. In addition to infusions, I had Zephyr valves inserted into my left lung, and the improvement has been incredible. I no longer wheeze, and I recover my breath much more easily—I can truly feel the difference. I highly encourage you to research Zephyr valves and consult a pulmonologist to see if you qualify. I had to travel three hours for my procedure, but it was well worth it. I couldn’t be happier with my doctor and the results!
For years, I struggled with shortness of breath without knowing I had Alpha-1. About six years ago, a nurse at my doctor’s office offered me a free test, though she wasn’t sure what it was for. Surprisingly, I said yes—something I wouldn’t normally do.
I wish I had known about this disease while my mother was still alive. She was the last of ten siblings, and my father passed away when I was five. Until about five years ago, he had one brother and two sisters still living. As you can imagine, I have no close relatives left to help me trace where I inherited this disease from.
I have passed Alpha-1 on to my son, and I wish I could find something to help me breathe without needing oxygen 24/7. Living in Bloomington, IN, I haven’t found anywhere to participate in trials for new treatments. My son is a doctor, so we would be open to trying something new.