LAWRENCEVILLE - For local children and adults who suffer from cystic fibrosis, the battle against the deadly hereditary disease is getting some additional foot soldiers - literally.
Organizers for Miles for Cystic Fibrosis, a group consisting of local volunteers who will run and walk in the upcoming ING Georgia Marathon in Atlanta to raise awareness of the debilitating disease for the second consecutive year as "Team 65 Roses," are expecting upward of 150 participants, up nearly half from last year's total.
The ING Georgia Marathon is scheduled for March 30.
Team 65 Roses' goal is to raise $65,000, half of which will go to The Cystic Fibrosis-Reaching Out Foundation Inc., a Lilburn-based organization that provides financial assistance to area cystic fibrosis patients and families. Since 1999, the foundation has provided more than $1 million in direct patient grants to roughly 1,500 families.
Susan Burroughs, 47, founder of the Reaching Out Foundation, is among the 30,000 children and adults nationwide who suffer from the disease. She likens the condition to having a cold 365 days a year. It causes the body to produce a thick, sticky mucus that contributes to life-threatening lung and digestive system complications.
Little was known about cystic fibrosis, or CF, in the 1950s, and few children with the disorder lived to attend elementary school, according to the Cystic Fibrosis Foundation. Advances in medical treatment are allowing CF sufferers, including Burroughs, to live into their 30s and 40s.
In May 2000, she received a double-lung transplant, an extremely dangerous surgery, yet one she calls "a life saver."
"The treatments have come a long way, but 31 is not an acceptable life span," she said, citing the median survival age. "More has to be done."
Sue Stein, spokeswoman for Miles for Cystic Fibrosis, agrees. Though the metro Atlanta area has facilities that treat both pediatric and adult cystic fibrosis patients, more adult facilities are needed, she said.
"For every two pediatric CF clinics, there is only one clinic that treats adults," she said. "Because the longevity has increased and more people are living (longer), there's been an unexpected leap (in adult patients)."
Miles for Cystic Fibrosis is the brainchild of Children's Healthcare of Atlanta at Scottish Rite pediatric pulminologists Peter Scott and Steve Julius. Both avid runners, the pair began to think of ways in which they could honor their patients and families while raising awareness of CF.
At mile 25 during the Boston Marathon in 2005, Scott found the answer. As he pounded his way to the finish line in the heat on that difficult day, he recognized a face in the crowd cheering him on: It was a CF patient he had treated for years.
"Thinking back on it, that was the moment in which my marathon life and CF life came together," he said.
Julius likens a marathon to living with the disease.
"Nowadays, more and more, the marathon is the gold standard for mental and physical strength," Julius said. "It perfectly exemplifies what these children and adults have to endure on a day-to-day basis."
After raising $15,000 in its first year in 2007 - an impressive feat, considering there was no organized vehicle for raising funds - organizers for Team 65 Roses opted this year to start early and "think big," according to Julius. While half of the money goes to Burroughs' foundation - a short-term solution to the day-to-day realities of the disease - half will go to the Cystic Fibrosis Foundation, a long-term investment in the search for a cure.
"(The marathon) brings awareness of CF for the entire community," Burroughs said. "It helps bring caregivers, neighbors and friends together to support those of us who have CF. It really means a lot. Not only for your family, but for your healthcare providers to support a cause that's very important."
For more information, visit www.milesforcysticfibrosis.org.