US COPD Coalition

Alpha-1 Foundation Names Miriam O’Day President & CEO


The following news release is re-printed from our U.S. COPD Coalition partner organization, the Alpha-1 Foundation.

The Alpha-1 Foundation Board of Directors is excited to announce the appointment of Miriam O’Day as the new president and chief executive officer (CEO) of the Alpha-1 Foundation.

“We thank Miriam for serving as interim CEO, since September 2018, and appreciate her dedication to the organization and hard work during the transition. The board of directors welcomes Miriam as a perfect fit for the Alpha-1 Foundation, as the new President and CEO. Her experience with the Alpha-1 patient community, the research and medical community, and public policy at the federal level, extends nearly twenty years and will help lead our Foundation forward,” said Jeanine D’Armiento, MD, PhD, chair of the board of directors of the Foundation.

Miriam O’Day and the late John W. Walsh first met in the late 1990s, when O’Day was vice president of the Immune Deficiency Foundation (IDF). They worked together for years on blood safety issues that were critical to both of them, since the immune deficiency and Alpha-1 communities both depended on human blood plasma for their therapies.

When O’Day left the IDF in 2000, Walsh, co-founder and president and CEO of the Alpha-1 Foundation at the time, contracted with her to serve as the Foundation’s senior director of public policy.

“Miriam has done the impossible,” said Walsh while introducing her as keynote speaker at the 2015 Alpha-1 National Education Conference. “She built a special, effective relationship called a liaison relationship with the FDA (U.S. Food and Drug Administration) and the NHLBI (National Heart, Lung, and Blood Institute). She engaged in an open relationship with CMS (the Centers for Medicare and Medicaid Services) on issues such as supplemental oxygen and access to pulmonary rehab. She’s carried the torch for us on regulatory affairs – the best patient advocate any community could possibly have.”

O’Day has been deeply involved in many key achievements for the Alpha-1 and rare disease communities, including:

  • The 2002 “March on Washington” that persuaded Medicare to cancel planned reimbursement cuts for augmentation therapy and helped to win passage of the Rare Disease Act that led to the establishment of both the Rare Lung Disease Consortium and the Cholestatic Liver Disease Consortium – both of which invest research dollars into Alpha-1.
  • The Genetic Information Nondiscrimination Act (GINA), which bans the use of genetic information in health insurance and employment decisions.
  • The CMS decision that Medicare would cover pulmonary rehabilitation.
  • The U.S. Department of Transportation ruling that required all airlines operating in the United States to allow passengers to take approved portable oxygen concentrators with them on the plane.
  • The Patient Notification System to notify patients of any recalls of blood products they might be using.

For years, O’Day represented many organizations besides the Foundation, including the former Alpha-1 Association, the COPD Foundation, the U.S. COPD Coalition, nontuberculous mycobacteria (NTM) lung disease Info and Research, and the American Association for Respiratory Care.

“AlphaNet is delighted with the Alpha-1 Foundation Board of Directors and their choice of Miriam O’Day as the new President and CEO. Miriam’s industry contacts, Alpha-1 experience, and dedication in the service to others will help both the Foundation and AlphaNet accomplish their missions. We are very fortunate to have someone of Miriam’s caliber,” said Mark Delvaux, president and CEO of AlphaNet.

O’Day pushed the idea of a Foundation magazine, which she described as “a People magazine for Alphas,” that became the Alpha-1-To-One magazine. She was the first editor. (In 2008 Miriam was featured on the cover of Alpha-1-To-One.)

Effectively, she was the voice in Washington DC for people with lung diseases and the allied health professionals who care for them.

“I am grateful to be selected to serve the Alpha-1 Foundation and its constituencies. Thank you to all of you who have supported and guided me upon my return to the organization. It is an honor that you have put your faith in me, and I promise to serve you with distinction. The work that we have to do together will carry forward and forever memorialize the innovative contribution made by my friend, mentor and founder of the Alpha-1 Foundation, John W. Walsh,” expressed Miriam O’Day, president and CEO of the Alpha-1 Foundation.