“We want to find a cure ... We will find a cure. And I must say, the hope is stronger now than it has ever been,” Ellington said. “Last year, I got to stand up here and talk about a new drug that had come out called Kalydeco.”
Ellington said, “It is the first drug of its kind which actually starts at the root causes of cystic fibrosis. We are not just treating the symptoms. We are getting down to the root so we can have a nice, healthy treatment.”
Only 4 percent of the 30,000 patients diagnosed with cystic fibrosis across the country match the drug’s specifications. These patients have experienced increased lung function and improved weight gain. Both are struggles for a person living with the genetic disease.
Lee University and the Cleveland community have been raising funds for research through the Great Strides walk for 13 years. Ellington announced the 13-year fundraising total to be $631,658. The money has gone, and will continue to go, toward research.
“We want this, obviously, for the other 96 percent of our population. And I must say, the research is great right now. We have some drugs which are in the final stages of the clinical trials that could help up to 65 percent of our population have this type of control as early as 2015,” Ellington said. “Guys, we are talking a year and a half to two years from now.”
Additional research could increase the odds in the remaining patients’ favor.
“What’s great is there is more research a little further down the pipeline that could take care of up to 95 percent of our population by 2017,” Ellington said. “So as we know, of course, it is research. There is always the opportunity things will not go like we want, but we are hopeful and we are prayerful as we continue to research and continue to fundraise to support that research.”
Ellington shared a story of a child recently placed on Kalydeco.
“I had a lady tell a story about how she had been serving her grandson bacon for years. He is probably 8 or 7 years old. He had been on Kalydeco for several weeks. She was making bacon one morning and he comes running down the stairs and says, ‘What is that smell,’ and she said, ‘Honey, it’s bacon. You’ve had bacon before,’” Ellington said. “He had never truly taken that deep breath and been able to smell bacon.”
She thanked Bill Estes, Mike Hayes, Vannessa Hammon, their support staff, Lee University and Cleveland for the committment to supporting research to find a cure for Cystic Fibrosis.
Hammon, Estes, Hayes and Paul Conn, Lee University president, gave their thanks to the Cleveland community, as well.
Sponsors, team leaders and supporters were recognized at the luncheon. Team Nathan was recognized as the top CF family team with $4,400 raised for the cause. A partnership between Garden Plaza and Life Care Center of Cleveland raised $5,700 to earn them the top overall fundraising team.
According to current reports, there were more than 40 teams with 36 registered walk teams and several race teams. A total of 683 official runners participated in the 65 Roses 5K and Kids Fun Run and more than 325 walkers participated in the Great Strides Walk. Hayes said there were a total of 1,295 people on Lee’s campus who came out to participate in one way or the other for the event.
A special thanks was given to the Cleveland Police Department for their help in keeping the roadways clear and the participants safe. Hammond thanked Beecher Hunter, Great Strides Honorary Chair and Life Care Centers of America president, for his involvement in the event for the second year.
Next year’s Great Strides Walk and 65 Roses 5K will take place on Saturday, April 12.