Announcing the New Chair of the Alpha-1 Foundation Board of Directors


The Alpha-1 Foundation announces the selection of Mr. Jon Hagstrom as the new Chair of the Alpha-1 Foundation Board of Directors. Jon assumes this new role on the board with a strong passion and commitment to the Alpha-1 community. He has been an active member of the Investment and Development Committees since 2019, elected Board Treasurer and Executive Committee member in 2021, and looks forward to his new position as Board Chair beginning in July 2022.

“On behalf of the Alpha-1 Foundation, I am excited to work with Jon to continue the mission-focused work of the Foundation that has been at the forefront for nearly 30 years. Thank you to Dr. Jeanine D’Armiento for her outstanding leadership as chair for the past four years and through the pandemic. The Foundation has truly been fortunate to have such dedicated volunteer leadership at the helm.” stated Scott Santarella, President and CEO of the Alpha-1 Foundation.

Jon Hagstrom spent over 20 years working in investment banking and management consulting. He was diagnosed as a ZZ Alpha in 2008, after noticing increasing shortness of breath. The course of his disease was quite aggressive, cutting his career short in his early 40s. He received a bilateral lung transplant at Duke University Medical Center in 2016.

Jon serves in a variety of roles for the Foundation, spanning all aspects of our mission. He has a keen interest in research and therapeutic development, serving as a patient representative on the Grant Advisory Committee, the Therapeutic Development Network Steering Committee, the Alpha-1 Research Registry Steering Committee, and the Alpha-1 Biomarker Consortium. He is passionate about patient support, serving as the Support Group Leader for the New York/New Jersey group, an Alpha-1 Global Advisory Committee member, and a Peer Guide for Alphas facing lung transplant. He is a fierce advocate for fellow Alphas, actively lobbying Congress for better care, championing patient interests to the FDA, and promoting early detection.

Jon is an avid classical pianist and resides in Dobbs Ferry, New York, with his teenage son.

“On behalf of the Board of Directors, I am thrilled to see Jon Hagstrom assume the role as Chair of the Board. It has truly been an honor to serve as Chair since 2018, working with the Alpha-1 community to execute the mission of the Foundation. As a physician scientist, I have been privileged to be part of both advancements in science and patient engagement, especially through the expansion of the Alpha-1 Research Registry and the development of the Alpha-1 Biomarker Consortium. Additionally, guiding our community through COVID over the past two years, although challenging, has been of utmost importance, and we look forward to emerging from the pandemic even stronger. Along with the Board and Scott’s leadership, I look forward to continuing alongside Jon in accelerating a cure for Alpha-1 Antitrypsin Deficiency,” stated Dr. Jeanine D’Armiento, immediate past Chair of the Alpha-1 Foundation Board of Directors.

“I am honored and humbled to have been selected as the new Chair of the Alpha-1 Foundation Board of Directors. As we emerge from a fully virtual environment, I am excited to work with my fellow Alphas, Scott, the Foundation staff, and the Board to renew our focus on the patient community. We are also fortunate to have the best research and therapeutic development landscape ever seen in Alpha-1, and the Foundation is well-positioned to accelerate that even further. It is truly an exciting time for Alphas,” said Jon Hagstrom.

About the Alpha-1 Foundation

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition that 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 Alpha-1 Foundation, founded in 1995, is committed to finding a cure for Alpha-1 and to improving the lives of people affected by Alpha-1 worldwide. The Foundation has invested over $90 million to support Alpha-1 research and programs at 123 institutions in North America, Europe, the Middle East, and Australia.

Contact: Jeanne Kushner

Director of Communications & Public Affairs

877-228-7321, ext. 204