The CF Foundation mourns the passing of an incredible leader


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Dear CF Foundation Community,

With a heavy heart, I'm writing to let you know that our dear friend and champion of the CF mission, Joe O'Donnell, died Sunday. Many of you knew or experienced Joe, who was a passionate advocate, a dedicated father, and a joyful, larger-than-life figure in so many CF events over the years. For four decades, his support was unwavering.


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One of the most impressive things about Joe and his wife, Kathy, is that in 1986, when they lost their son Joey to cystic fibrosis at the age of 12, they had every reason to want to leave this disease behind. Instead, they doubled down. He and Kathy, along with daughters Kate and Casey, have dedicated themselves to advancing the Foundation's mission for four decades in honor of Joey and on behalf of all people with CF. They created The Joey Fund as a tribute to him and continue working in partnership with the Foundation to advance our shared mission to cure CF.

In addition to helping launch the
CF Congressional Caucus ([link removed])
with his childhood friend 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, Joe is personally responsible for helping to raise more than $500 million. These contributions enabled unprecedented progress in CF research and care, including the development of four therapies that treat the underlying cause of the disease.

Joe served as chairman of the Foundation's Milestones I and II major gift campaigns. To accelerate progress toward genetic therapies -- our best hope for a cure for all people with CF -- he chaired the current
Milestones III ([link removed])
campaign, with a goal of raising $200 million by the end of 2024. So far, Milestones III has raised more than $150 million toward that goal.

Joe would travel anywhere and talk to anyone who could advance efforts to cure cystic fibrosis. He was determined, energizing, funny, and fearless. I personally learned so much from Joe about rallying a community through hope and resilience. We will all miss him deeply, and we will honor his legacy every day by moving fearlessly ahead.

Today, we are so fortunate to have the O'Donnell legacy live on at the Foundation. Last year, Kate O'Donnell joined our Board of Trustees after volunteering for more than 20 years. She also serves as president of The Joey Fund. Kate has already begun adding value through innovative perspective on the next generation of programming we can offer our community.

For those interested in giving to the CF Foundation, a gift can be made by visiting
www.cff.org/donate ([link removed]). 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.

For anyone specifically interested in making a major gift or legacy commitment to support the Milestones III campaign, please contact Senior National Leadership Giving Director Angela Lynn (301) 907-2578, [email protected] (mailto:[email protected]), (mailto:[email protected])mailto:[email protected] (mailto:[email protected]) or your local chapter executive director.

We will recognize Joe at key Foundation events this year and welcome all your stories and memories. Thank you for your support -- may we all continue to be inspired by Joe's amazing determination and commitment.

With gratitude,

Michael Boyle, MD

President and Chief Executive Officer

Cystic Fibrosis Foundation


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4550 Montgomery Avenue, Suite 1100N | Bethesda, MD 20814 US


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