For many people, Cystic Fibrosis is a disease with which they have a vague familiarity at best. New York Giants’ kicker Josh Brown is working to change that. Brown, a native of Tulsa, Oklahoma, has long worked on behalf of the Cystic Fibrosis Foundation, paying homage to his childhood friend, Jason, who succumbed to the disease when he was a teenager.
Cystic Fibrosis is genetic and affects the lungs and digestive system. The lungs produce mucous, which they are unable to clear, ultimately causing fatal lung infections. For those whose digestive system is affected, the pancreas stops producing the natural enzymes, which break food down and absorb nutrients. The disease affects approximately 30,000 people in the United States.
Brown’s work on behalf of Cystic Fibrosis began in college, when he was involved with some of Boomer Esiason’s efforts. Esiason’s son, Gunner, was diagnosed with Cystic Fibrosis at the age of two. He is now 23 years old. For almost twenty years, Esiason has run the Boomer Esiason Foundation, which raises money to support research about the disease.
Once Brown was drafted by the Seattle Seahawks in 2003, he decided that Cystic Fibrosis was the cause he wanted to lend his name and efforts to. Now for more than a decade Brown has committed himself to helping to raise funds and awareness about the disease in any way he can in the quest to find a cure.
Since his work began Brown has seen tangible inroads in the fight against Cystic Fibrosis. New medications are continuing to extend the average life expectancy of those with the disease. In fact, in 2012, the drug Kalydeco (ivacaftor) was introduced, which is showing strong possibilities of treating the underlying causes of the disease rather than just the symptoms and that continues to drive Brown.
“Life spans are increasing and it motivates you,” he said. “The light at the end of the tunnel is getting bigger. I don’t want to estimate how far we are away from having an absolute cure, but the drugs that are coming out now are affecting over half the population.”
This kind of success is due in part to the type of fundraising that Brown has been involved in. In addition to helping host a couple of major fundraisers each year, Brown also has his Good for Three program, which works directly with the father of a Cystic Fibrosis patient who has made finding a cure his priority. Sponsors are solicited for every kick Brown makes during the season. Each sponsor pledges a specific amount of money he or she will donate each time Brown makes a field goal. They write checks, which are then turned in to the Cystic Fibrosis Foundation.
None of the fundraising is government-backed so the events are a major source of funds, which provide the means for the medical community to work toward better treatments and ultimately a cure.
“It’s year round, all different kinds of events to bring a little bit of money here and there,” Brown said. “We did a three million dollar night in Seattle because we had a backer (who matched the donations). What an amazing thing to be able to give that to the organization and then they give it to the researchers and doctors who are literally changing lives.”
Because of these inroads, some of the children Brown first started working with in Seattle are now moving forward in their adult lives and he has made some lasting relationships.
“We’ve been very fortunate,” he said. “We have a lot of the kids in Seattle who are still doing very well today. We do have some that are not. You try to stay in contact with everyone as best you can.”
Brown’s own children, ages 16, 12 and 5, take part in the Cystic Fibrosis Great Strides events and he is proud of the compassion and understanding that they have learned. And Brown is looking forward to a day in the near future when he will see the final rewards of everyone’s hard work when a cure is found for the disease.
For more information about Cystic Fibrosis: www.cff.org