Cystic Fibrosis: Tommy’s Story

Published on

Tommy Brophy had his hands full during his first semester of college at University of Maryland. Like his fellow freshmen, he had to learn his way around, manage his course load, and keep up with an ever-expanding social network. He also had one other major thing to handle — his cystic fibrosis.

Tommy CF patient standing with his Grandmother smiling Tommy with his grandmother But it was actually the combination of his disease and his growing circle of friends that inspired Tommy to add one more item to his agenda — he organized a campus-wide “Great Strides” fundraising walk for the Cystic Fibrosis Foundation.

The Cystic Fibrosis Foundation is important to Tommy, now 21, who was 6 months old when he was diagnosed with cystic fibrosis (CF). CF is a genetic disease that causes a thick buildup of mucus in the lungs, pancreas and other organs.

Owning his CF

Since he was a baby, Tommy has been treated by the team at the Cystic Fibrosis Center at Children’s Hospital of Philadelphia.

Over the years, he has made the transition from relying completely on his parents for his CF care to independently taking control of his therapies and medications. As with all people with CF, this change in “ownership” of the disease happened gradually with setbacks at times. With the help and encouragement of his parents and CF team, Tommy has successfully taken control of this aspect of his life.

Every few months, he makes the trip back from Maryland to see Julian Allen, MD, and Barbara Jansma, CRNP, who have been his primary CF providers over the years. Tommy has also proactively found other ways to take ownership of his disease.

Growing up, Tommy and his family participated in a Great Strides walk each year, capping each successful event with a party at their home. Tommy was thinking about how the annual event brought his friends and family together when he realized he could harness the social energy on campus for the same cause.

“Organizing the walk was a big step for me in terms of owning my CF,” he says. “In the past, I was hesitant to really make a big deal out of it or broadcast it, but when I arrived at Maryland and met the people that I did, it became clear to me that I had a great opportunity to start something with a lot of potential.”

Campus organizing 101

Tommy CF patient with his brother Henry, sister Lindsay and older brother Sean (far right) Left to right: Tommy with his brother Henry, sister Lindsay and older brother Sean Tommy’s first order of business was to contact the Metropolitan Washington, D.C. chapter of the Cystic Fibrosis Foundation.

“I just thought I might as well try, and could learn from it and keep improving it every year,” he says.

Next, he registered with campus recreational services as a student organization, and reserved a date and location for the 2-mile walk. He met with the campus police chief, mapped out the course, secured donations from corporate sponsors and promoted the event.

There were a few glitches along the way — and a few lessons. Two months before the April walk, Tommy found out he had reserved the wrong spot for the event launch. Fortunately, he cleared that up in time. Tommy’s biggest miscalculation, however, was scheduling the event for 8 a.m. on a Sunday. Sixty people showed up, a disappointing turnout. For Tommy, an economics major, it was a real-life lesson in the cost vs. benefit equation. Rising early on a weekend morning comes at too great a cost to the average college student, he learned.

The walk did bring in $19,000, a healthy number, but Tommy knew he could do better with a later start time. His sophomore year, the organizing went more smoothly and Tommy moved the launch time to 2 p.m. That walk attracted 281 people and brought in more than $35,000. On April 23, 2017, his third walk brought in slightly more.

“This year the event raised over $36,000, continuing off our success of last year, but with higher registration numbers and turnout on a day expected to be a rainout,” he says. (Read more about Tommy's life at UMD, where he serves as student manager of the lacrosse team, in a recent Washington Post article.)

Raising awareness

Tommy CF Patient with soccer player Olympic gold medalist Alex Morgan Tommy with soccer player and Olympic gold medalist Alex Morgan According to the Cystic Fibrosis Foundation, more than 125,000 people participate in Great Strides walks around the country each year. The money raised helps pay for research and to develop new drugs aimed at treating CF. 

For Tommy, organizing the walk at UMD is just as much about raising awareness of cystic fibrosis as it is about bringing in research dollars. He has found that education is key to understanding and support, and since arriving on campus as a freshman, he has been candid about his disease. Tommy uses a therapy vest for 20 minutes twice a day and gives himself daily nebulizer treatments. He also uses an inhaler and takes oral medication.

“During my freshman year, I was very up front with people about letting them know I had CF and talking about how it has impacted my life and continues to do so,” he says.

Tommy’s efforts were recognized in January 2017 when the Metro D.C. Chapter of the Cystic Fibrosis Foundation honored him with the CF Star Award. The award is given to a person with CF who makes an impact in the community.

Tommy says he plans to stay involved with fundraising, raising awareness, and supporting the CF Foundation after he graduates. As for the Great Strides Walk at UMD, he hopes his fraternity or the Metro D.C. Chapter of the Cystic Fibrosis Foundation will take over after he graduates.

“I expect it to continue to grow and expand,” he says. “And I plan to return as often as I can to attend it.”

“The whole team is very proud of him,” says Fran Goldsledger, MSW, a Social Worker in the Cystic Fibrosis Center who has worked with Tommy over the years. “He has really taken ownership of his CF and found ways to cope while helping others at the same time.”

Originally published May 2017

Why Choose CHOP for CF Care

The Cystic Fibrosis Center at Children's Hospital of Philadelphia is accredited for care, teaching and research by the Cystic Fibrosis Foundation.

Your Child's CF Center Visit

During each visit to the Cystic Fibrosis Center, your child may see a number of multidisciplinary experts. Learn about the care they provide.


You Might Also Like
Abby

Helping Abby Grow

Born with cystic fibrosis, a G-tube ultimately gave Abby the boost she needed to grow stronger.

Angela Distasio

Angela’s Story

Watching Angela glide across the dance floor, you’d never suspect she has cystic fibrosis.

Jessica CF patient in Israel

Letting Go

Jessica was well prepared to manage her cystic fibrosis at college. In fact, it may have been harder on her mom.