2 cite living proof of gains in cystic fibrosis battle

Carmen Smith (left) and Brittany Goings Marsh are volunteers with the Arkansas Cystic Fibrosis Foundation. The group’s Taste of the Finest event is scheduled for Aug. 20 with Lost Forty Brewing as a sponsor.
Carmen Smith (left) and Brittany Goings Marsh are volunteers with the Arkansas Cystic Fibrosis Foundation. The group’s Taste of the Finest event is scheduled for Aug. 20 with Lost Forty Brewing as a sponsor.

Brittany Goings Marsh and Carmen Smith like tangible results.

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Carmen Smith (left) and Brittany Goings Marsh are volunteers with the Arkansas Cystic Fibrosis Foundation. Each one raised more than $10,000 for the foundation in 2014. The duo are helping to organize the foundation’s annual Taste of the Finest event, for which Lost Forty Brewing is a sponsor.

Soliciting donations is never easy, but the charitable duo find that the quest is always easier when donors know exactly how their funds are making an impact.

With the Cystic Fibrosis Foundation, it's easy. For Smith, the results are right at home. Shortly after her son, Crosby, was born in September 2013, he was diagnosed with cystic fibrosis, a genetic disease that causes a buildup of mucus in organs including the lungs and affects about 30,000 nationwide. For Smith and her husband, Lance, the news was devastating.

"You're at Children's Hospital getting these results and meeting with specialists and I was just shutting down," Smith, a lawyer at DataPath Inc. in Little Rock, says. "I thought it was a childhood death sentence."

Social workers at the hospital gave Smith the numbers of other families affected by cystic fibrosis. But Smith had already read enough about the disease's impact online, she says, and was hesitant to hear any more bad news. Two months and several phone calls to the Arkansas chapter of the cystic fibrosis foundation later, she had a more optimistic view.

"The hope was there by December," Smith says. "I realized we had this whole foundation and all these people looking out for us."

Now, Smith credits nearly every medication and treatment that Crosby receives to the foundation's research investments. She also credits Crosby's early diagnosis to the work of the foundation.

"He was diagnosed ... through the mandatory newborn screening the state of Arkansas does," Smith says. "The [foundation] was responsible for getting all states to screen by 2010/2011."

Most recently, the foundation has been involved in the development of drugs such as Orkambi and Kalydeco to help improve patient's lung function.

"I can't change that my son has cystic fibrosis, but I can raise money and raise awareness," Smith says. "And if I'm not going to be out there doing it, how can I ask someone else to?"

Smith says she's especially grateful for foundation volunteers like Goings Marsh who aren't directly affected by the disease but "have it on their heart to get involved."

Goings Marsh, a pharmacist at Cornerstone Pharmacy in Little Rock, first became involved with the foundation through family friends who are living with the disease. Seeing how the foundation's research and medications helped those friends led her to get more involved with this cause than she has ever been with an organization before.

In 2014, Goings Marsh and Smith were among the 25 honorees at the Little Rock Taste of the Finest, an annual fundraising event put on by the foundation to honor up-and-coming young professionals in the Little Rock area. The two women each raised more than $10,000 for the event, nearly a quarter of the $82,868 that was raised for the foundation during Taste. Goings Marsh earned the foundation's Todd Miles Award for being the top fundraiser in her class of Taste of the Finest honorees.

"It's an honor to give back to the foundation," Goings Marsh says. "It's amazing knowing that they're doing so much to find a cure and that your money is directly funding the research behind these drugs."

Goings Marsh uses the example of those breakthrough drugs -- and the way they have benefited her two close family friends dealing with cystic fibrosis -- any time she talks about the foundation with someone considering a donation.

Smith, who raised more than $30,000 since getting involved with the foundation less than two years ago, also likes to point out to donors just how much of their money is going to research, rather than to overhead costs.

"The foundation is so open, and 90 cents on the dollar goes back to research," Smith says. "I always like to joke, 'Imagine if our state or federal government operated on that kind of margin.'"

For the 2015 Taste of the Finest -- set for Aug. 20 at the Metroplex in Little Rock -- Smith and Goings Marsh are taking on an organizational role, serving on planning committees for the event, which includes music, food from area restaurants and drinks from sponsors including Lost Forty Brewing.

But more than the fun of a night out with colleagues, family and friends, Smith appreciates Taste and the work of the foundation as a way to educate Arkansans about a disease they may have heard about in passing, but don't really understand, especially when it comes to the strides that have been made in recent years to extend the lifespan of those with cystic fibrosis.

"I truly believe, with all my heart, 100 percent, that within my son's lifetime, we're going to see a cure," Smith says. "I tell our friends and family when I'm on my soapbox begging for money that someday they can say, 'I was part of that cure.'"

The 2015 Taste of the Finest will be Aug. 20 at the Metroplex in Little Rock. Tickets start at $75. For more information, (501) 371-0233 or finest.cff.org.

High Profile on 08/09/2015

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