In the Spotlight

“I’m living testament to the value of adherence to new CF drug therapies and commitment to regular exercise,” says Joan, (center) with husband Peter (right), nephew Dan and his girlfriend Julianne. “The day-to-day impact of advancements in CF care allows me to do what I want to do in my life, not just what I have to do to stay healthy.”
“I’m living testament to the value of adherence to
new CF drug therapies and commitment to regular
exercise,” says Joan, (center) with husband Peter
(right), nephew Dan and his girlfriend Julianne.
“The day-to-day impact of advancements in CF care
allows me to do what I want to do in my life, not just
what I have to do to stay healthy.”
Joan Finnegan Brooks

When Joan Finnegan Brooks celebrated her 50th birthday in July 2010, she cherished each and every candle on her cake.

For Joan, who has cystic fibrosis, every birthday is a milestone and cause for celebration. “I often joke that I’m the only woman over 40 who will gladly tell everyone in the room my age,” she says with a laugh. “This was a big birthday for me, and I’m grateful for all of them.”

Making Health a Priority

Joan grew up 25 miles north of Manhattan with her parents and two older brothers, John and Pat. Her parents are both now deceased, and John passed away from CF when Joan was nine years old. Pat, who didn’t have CF, died the year Joan got married. “I was so fortunate to be adopted into a wonderful family who knew about CF and taught me independence and responsibility at a young age,” she says.

While playing field hockey as a teenager, she noticed that the sport helped keep her lungs clear and made her feel better. “This was way before exercise was recognized as being helpful and therapeutic for those with CF,” she says. This is just one example, Joan explains, of how different life with CF was when she was a child.

“There were many times as a child that I was plagued with lung infections and a deep cough that would linger for weeks. Back in those days, there weren’t many treatments to help people with CF. Now the philosophy of CF care is very different and more aggressive. Thanks in large part to the CF Foundation, there are new drugs and therapies today that weren’t available when I was a kid.”

With a commitment to healthy living — including a love of sports and exercise and a strict adherence to her CF and CF-related diabetes treatment regimen — Joan says she feels healthier today than she did as a teen. “My parents always used to say: ‘Your health is your number-one priority.’ At some point, these words went from being a cliché to a credo I live by.”

Giving Back to the CF Community

Today Joan lives in the Boston area and regularly runs, cycles and does core strength training to stay healthy. After graduating from Brown University with a degree in economics and working nearly 20 years in the banking industry, Joan transitioned to a career that leveraged both her professional skills and her passion for supporting the CF community. She founded her own consulting practice, Patient-Focused Market Research, and helps drug companies understand cystic fibrosis, its challenges and the impact of potential therapies from patients’ and caregivers’ perspectives.

Joan credits her strong support system, especially her husband of 21 years, Peter, and her parents, with setting her up for a lifetime of success. “My parents taught me how to take care of myself in a way that I incorporate into my daily life. That is by far the best gift I’ve ever received.”

Joan flashes a triumphant smile after finishing the August 2010 Seacoast Safari — a two-day 150-mile cycling tour along the coastline, hosted by the CF Foundation’s Northern New England Chapter.
Joan flashes a triumphant smile after finishing
the July 2009 Seacoast Safari — a two-day
150-mile cycling tour along the coastline,
hosted by the CF Foundation’s Northern New
England Chapter.
A longtime CF Foundation volunteer and advocate, Joan was past president and a member of the Massachusetts/Rhode Island Chapter board. She currently serves on the Foundation’s Advisory Task Force on Adult Issues and authors a column about adult CF issues in Homeline, the newsletter of the CF Services Pharmacy.

In addition, Joan is a leader in initiatives focused on clinical trial participation, guidelines for patient care, and empowering people with CF and their families to partner with their health care team to better manage the disease.

Looking Ahead

Since completing her first marathon in 1998, Joan continues to run and cycle long distances. In August 2010, she completed the CIGNA Falmouth Road Race in Massachusetts. “No matter my finishing time, I am triumphant when I cross the finish line and grateful that I am breathing well enough to compete in such a demanding race,” Joan says.

She also remains committed to doing whatever she can to support the community of people who have given so much to her.

“My dream is that no one affected by CF feels that the struggle with the challenges of the disease is theirs alone,” she says. “I want to help people with CF learn the skills of taking good care of their health needs first, so that they can focus on what they want to accomplish in their lives.”

As a witness to the incredible transformation of CF care and treatments over the past 50 years, Joan is confident that many exciting developments lie ahead. “I’ve seen the ‘before and after,’ and I can tell you the ‘after’ is so much better,” she says.

“I’m healthier now at 50 than I was at 16. I’m not as fast a runner, but that doesn’t have anything to do with CF — I’m just getting older! It’s a good problem to have.”

Watch Joan describe how advancements in CF research
and care have changed her life.

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Posted 09/09/10