CF Foundation Honors the Legacy of Joe O’Donnell

The Cystic Fibrosis Foundation mourns the passing of long-standing CF community champion and philanthropic leader who helped to raise more than $500 million toward the CF cause.

Jan. 8, 2024 | 4 min read

The Cystic Fibrosis Foundation mourns the passing of beloved friend and philanthropic leader Joe O’Donnell and honors his legacy as a passionate champion for all people living with cystic fibrosis. Joe and his wife, Kathy, along with daughters, Kate and Casey, have dedicated themselves to advancing the Foundation’s mission for four decades in honor of their son, Joey, who died from CF in 1986. They created The Joey Fund as a tribute to him and continue working in partnership with the Foundation to cure CF. 

“Joe O’Donnell will be remembered as an unstoppable force whose commitment to finding a cure for CF had no bounds. His love for his family and his deep passion for this community inspired countless efforts to support people with CF,” stated Michael Boyle, MD, president and CEO of the Cystic Fibrosis Foundation. “He was a fiercely inspirational leader and a man of action, whose contributions are responsible for fueling the Foundation’s breakthrough scientific advancements, which have significantly extended the lives of many people with CF.”

In addition to helping launch the CF Congressional Caucus with Sen. Ed Markey (D-MA), serving on the Foundation's Board of Trustees, and receiving the Dream Big Award in 2016 for his vision, leadership, and volunteer efforts, O’Donnell was personally responsible for helping to raise more than $500 million toward the CF cause. These contributions enabled unprecedented progress in CF research and care, including the development of four therapies that treat the underlying cause of the disease.

 O’Donnell served as chairman of the Foundation’s Milestones I and II major gift campaigns, raising more than $257 million. To accelerate progress toward genetic therapies – our best hope for a cure for all people with CF — he stepped up to lead a third campaign, Milestones III, with a goal of raising $200 million by the end of 2024. To date, Milestones III has raised more than $150 million toward that goal.

While advocating for the CF community was at the heart of O’Donnell’s charitable efforts, his generous spirit has been felt far beyond the CF cause. His philanthropic endeavors included serving on the boards of Harvard Corporation, Children’s Hospital Trust, Malden Catholic High School, the Perkins School for the Blind, and the Winsor School in Boston. He served as Overseer of the Boys and Girls Clubs of Boston and in 2001 was appointed by President George W. Bush to the President’s Advisory Committee on the Arts.

“As a person living with cystic fibrosis, I am deeply grateful for Joe’s unwavering dedication to the CF community in honor of his son Joey,” said KC White, chair of the CF Foundation Board of Trustees. “Joe’s contributions have altered the course of this disease, allowing people with CF to pursue their dreams at fuller capacity. I am among the many that will miss our dear friend and great champion of our community. There is no doubt that Joe’s legacy will endure, continuing to inspire us as we strive to find a cure for every person with CF.” 

For those interested in giving to the CF Foundation, a gift can be made by visiting Write “in memory of Joe O’Donnell” on your donation form if you wish to pay tribute to Joe. Your gift of any size will go into the Joe O’Donnell Memorial Fund and be recognized toward the Milestones III Campaign. You can also contact your local chapter staff or individual giving officer for help in making a major or planned gift in honor of Joe.

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