cystic fibrosis research

COMMUNITY

A lasting friendship inspires local company to help fight cystic fibrosis

Leann Ott, left, and Emily Bridges pose together in front of a car (Photo by Catrina Maxwell).

BY SAMMIE PURCELL

Spurred on by the impact of a lifelong friendship, a local construction company is headed into its 13th year of supporting cystic fibrosis research.

Cars & Q For the Cause is a yearly fundraising event put on by Sandy Springs-based Choate Construction Company that benefits the Cystic Fibrosis Foundation.

Choate Construction was founded by Millard Choate, and he and his daughter, Emily Bridges, are the driving forces behind the company’s desire to help find a cure for cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs.

While cystic fibrosis is relatively rare – according to the Cystic Fibrosis Foundation, close to 40,000 people in the United States have the disorder – Bridges, who serves as the vice president of marketing for Choate, has been quite aware of the disorder from a young age. Her childhood friend, Leann Ott, was diagnosed with cystic fibrosis when the two were just in preschool.

“At that time, CF was really a death sentence,” said Bridges, a Brookhaven resident. “The average life expectancy was about 13. So as you can imagine, that’s just a devastating diagnosis.”

Ott passed away in 2018, but lived much past that expected age of 13. She and Bridges went to high school together. Ott attended Boston University, and she got married, living life to the fullest.

“I think about the strength that she had, and I think that empowers me to want to do right by her,” Bridges said. “It’s my honor to help continue to propel the support of cystic fibrosis here at Choate and beyond.” Since Ott’s diagnosis, research into cystic fibrosis has progressed significantly. Molly Taggart, executive director for the Cystic Fibrosis Foundation, said the life expectancy of someone born with cystic fibrosis has doubled in the past 30 years. “I have seen an increase in pregnancies among women who have CF, a decrease in lung transplants for those with severe lung disease and that now over half of those living with CF are over the age of 18,” she said in an email. “In my time at the Foundation, I have seen people with CF fulfilling their dreams — graduating from college, starting careers, getting married, and becoming parents themselves.” Choate has been supporting the Cystic Fibrosis Foundation since the company’s inception in 1989. At first, the company put on a number of events to raise money, such as golf tournaments, and participated in the foundation’s “Great At left, Emily Bridges and Leann Strides” walk event. But

Ott at Leann’s wedding. Bridges said it quickly became apparent that they needed an event everyone could rally around. Cars seemed to be that thing. While Cars & Q started off as a sort of adjunct event to the walk, it’s now Choate’s main fundraising event. With this year’s event, Choate expects to exceed $6 million of total contributions to the Cystic Fibrosis

Foundation.

“This will be our 13th year,” Bridges said. “The last few years, COVID notwithstanding, we have had anywhere from 1,000 to 1,200 attendees. We’ve raised $500,000-plus the last few years. It’s really grown.” Cars & Q 2022

This year’s event will take place on Oct. 22 from 3-6 p.m. at 8200 Roberts Drive. Bridges called the event a “car show/party blend,” and said this year, Choate expects to have over 100 cars on the lot.

“We typically have an incredible breadth of types of cars,” Bridges said. “Everything from early 1910s cars all the way through brand new, hot-off-the-market exotics, and everything in between.”

The event will also include live music from a band called The Rogue Tones, barbeque from Jim ‘n Nick’s, and beer and wine from places like Pontoon Brewing, Deep Roots Wine Market & Tasting Room, and New Realm Brewing Company. This year even includes a special guest emcee – former Atlanta Braves player Sid Bream.

Every year, Choate selects a few Cars & Q Ambassadors, or cystic fibrosis patients that Choate honors with their fundraising. This year, one of the ambassadors is 5-year-old Saiul Marrero from the Woodland Hills area. According to Saiul’s mother, Nacida Marrero, Saiul was diagnosed with cystic fibrosis as an infant, but his diagnosis was delayed because he is Latino. Cystic fibrosis is one of the most common genetic disorders amongst white people in the United States, but according to the foundation, non-white people with cystic fibrosis are more likely to have rare mutations that might not be treatable.

“Saiul’s newborn screening flagged him for CF, but because it is less common for Latino people to be carriers of cystic fibrosis and one of his mutations is rare, the doctors assumed something else was wrong with Saiul,” said Nacida Marrero in a Q&A with the Cystic Fibrosis Foundation.

Nacida goes on to say that she and her family want to fight to make sure everyone has access to equitable healthcare when it comes to cystic fibrosis.

“CF is a disease that affects people of all races, and we are working together for a cure for all,” she said. Warrior Award

At Cars & Q, Choate will also recognize a sponsor who has offered their support to the event over the years. This year’s Warrior Award will go to Ameris Bank, but the award holds a special place for Bridges.

Bridges said that Ott’s passing in 2018 came right before a treatment called Trikafta came on the market. Trikafta is a therapy that treats the underlying cause of cystic fibrosis and is approved for people ages 6 or older who have certain mutations. According to the U.S. Food and Drug Administration, the mutation in question is estimated to represent 90% of the cystic fibrosis population. The Warrior Award is named in honor of

Ott. “She was a warrior all the way through. It’s not an easy disease to live with by any means – pretty brutal, actually,” Bridges said. “She really paved the way for the funds that have been raised, not just through Choate … but in so many other arenas of the CF world.” Bridges remembers her friend’s joy and resiliency in the face of her diagnosis, and spoke fondly of her laugh, her drive, and her “no reservations” attitude towards life. “It’s tough to live with CF. People look at you, and you look okay on the outside,” she said. “It’s difficult to live in that, especially when people can’t tell.” Sauil’s mother said similar things about living with cystic fibrosis, adding that a regular day for Saiul looks like a day for anyone else – just with a Emily Bridges announcing onstage at a Cars & Q event. bunch of other hurdles to consider. “In a lot of ways, Saiul is a normal little boy,” she said. “If you just look at him, you see a happy and healthy boy who is thriving.

He is all those things, but he fights every day to remain that boy.” A drug like Trikafta represents a big leap forward in the cystic fibrosis world. Taggart said there are currently three other therapies available to treat three other mutations,

Kalydeco, Orkambi, and Symdeko. These cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies are made to correct the malfunctioning protein made by the CFTR gene. “More potential CFTR modulators are in development to address the underlying cause of the disease in people with other CF mutations,” Taggart said. “Our goal is a cure for 100% of people living with CF. We will not leave anyone behind.” Bridges said while it’s amazing that a drug like Trikafta might be able to help 90% of cystic fibrosis patients, the goal is to find a way to help everyone. “A control is good, but I want a cure,”

Bridges said. “For that 10%, that’s really who we fight for now. We’re not quitting the game until we’re over the goal line.”

Saiul Marrero, 5, who was diagnosed with cystic fibrosis as an infant.