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Birmingham is a leader in cystic fibrosis (CF) research. Thanks to the work of the Cystic Fibrosis Foundation, UAB and Southern Research Institute, those with CF are receiving better treatments and living longer than ever. Learn more about CF and how you can get involved, including the Shoot for a Cure event on October 11.
What is cystic fibrosis?
Cystic fibrosis is a genetic disease that affects the lungs, pancreas, GI system and other parts of the body. People with CF have a defective gene that causes a buildup of mucus in the body, which leads to lung infections and difficulty breathing. Over time, the lungs become damaged, and the damage is irreversible. In the pancreas, mucus buildup can interfere with digestion and result in malnutrition.
According to the Cystic Fibrosis Foundation, more than 30,000 people in the U.S. have CF. Most people are diagnosed by two years of age.
A day in the life with Cystic Fibrosis
David Cobb, board member of the Alabama Chapter of the Cystic Fibrosis Foundation, was diagnosed with CF as an infant. He explained a typical well day living with the disease.
Each day starts with a two-hour process of medications, hydration, breathing treatments and chest physical therapy, followed by sterilization of all equipment. He takes an additional round of medication at lunchtime and repeats the process again after dinner.
“No two days are alike,” said Cobb. “One day, my family is on standby to see if I’ll be admitted to the hospital. Another day, I could help you dig a ditch in the front yard.”
Because there are different mutations of CF, typical days and treatment types vary for each person. CF often results in hospitalization for infection.
Modulators, which target the defective gene that causes CF, are the newest treatment option, and hopefully will soon be available to almost 90 percent of those living with CF.
“Treatment is geared toward the mutation a patient has,” said Elaine Chambless, Senior Director of Development for the Cystic Fibrosis Foundation’s Alabama chapter. “It helps correct the gene that’s malfunctioning.”
Much of the research goes on in Birmingham at UAB. UAB is home to the Gregory Fleming James Cystic Fibrosis Research Center, which has a clinic for CF patients in addition to research facilities. The center, led by Dr. Steven Rowe, sees about 400 CF patients each year.
Cobb, who lives in Heflin, Alabama, explained that having a CF clinic close to home makes a huge impact. “It can be the difference between life and death,” he said.
What you can do to join the fight to cure CF
Consider getting involved with the Alabama Chapter of the Cystic Fibrosis Foundation in Birmingham. Their 14th annual sporting clays competition, Shoot for a Cure, is happening on October 11 at Selwood Farm beginning at 8:00 a.m. Buy tickets here.
Cystic Fibrosis Foundation board member and sporting clays event chair, Joel Barber of Vulcan Materials Company, said he decided to get involved with the foundation after a friend’s child was diagnosed with CF. “Since then, I’ve tried to do everything I can to add days, weeks and total lifespans to people living with CF,” he said.
With connections in the construction and mining industry and dedication to the CF Foundation, Barber, fellow Vulcan employees and CF Foundation staff rally each year to secure sponsorships and participants who are interested in joining forces to help in the fight against CF.
“The shoot provides a great networking opportunity for those in the industry and a great way for everyone to help raise funds for the important research going on in Alabama,” he said. The sporting clays event has grown each year–last year’s event raised just over $100,000.
If you can’t make the sporting clays shoot, there is also a Birmingham’s Finest event for young professionals. It’s a competition to see who can raise the most money for the CF Foundation, and fundraising rock stars will be recognized at an event on November 21 in downtown Birmingham.
What the future holds
As treatments continue to be refined, CF patients will be able to live longer lives. “If we get kids on the modulators when they’re little, before there’s any damage done, they will get to grow old,” said Cobb. “There’s a lot of hope.”
Interested in learning more about CF or the work of the Cystic Fibrosis Foundation? Visit their website.