Pushing For A Cure

An estimated 30,000 children and adults in the United States are currently living with Cystic Fibrosis according to the Cystic Fibrosis Foundation. Essentially, CF is a defective gene, a genetic mutation. There are over 1,400 variations of the CF gene. And while lives of CF patients are too short, CF patients typically have something in common: a resilient spirit and a zest for life despite the many challenges of the disease.

Kyndall Lowe of Tyler is a perfect example. Her mother, Gwen, shared that Kyndall was diagnosed at 22 months old in 1989 – just two months before the identification of the CF gene. She lived fully when she felt well, and also overcame many difficult complications due to CF, including Cystic Fibrosis Related Diabetes, a liver transplant and Post Transplant Lymphatic Disorder.

Gwen explained, “I believe many CF patients and their families live knowing that death is a part of life.” However, Kyndall focused on living with tenacity. She became involved with the Cystic Fibrosis Foundation and helped raise funds for the first Great Strides Walk in Tyler. As a spokesperson, she addressed at many area schools to raise CF awareness.

In the spring of 2010, another obstacle included severe damage to Kyndall's lungs from years of CF and a raging infection. She was put on the list for a double lung transplant and received new, "perfect match" lungs on Oct. 16, 2010. Everyone had high hopes for a full recovery followed by a spring wedding to her fiancé, James Pollard. Due to compilations that occur in 2 percent of lung transplants, “On Jan. 11, 2011 Kyndall won her battle with CF as she was ushered into the presence of her Lord, perfectly and fully healed,” Gwen recalled. Full of hope, her mother says that while their loss is great, they retain much faith in God and the future of CF. New treatments and drugs for CF helped Kyndall overcome many of her health complications, and Gwen says they will only improve as a cure gets closer.

Approximately one in 35 adults is a carrier of the CF gene. Since it's inception in the '50s, the Cystic Fibrosis Foundation has literally made great strides. In 1955, children with cystic fibrosis were not expected to live long enough to attend grade school. Dacia Edmonson, Director of Development for the Cystic Fibrosis Foundation, Northeast Texas Chapter Tyler Branch explained that back in the '50s CF was more difficult to diagnose. Many children were not diagnosed until it was too late. Currently, the median age for someone with CF is 37.4 years and the age continues to lengthen due to research. “I've been looking back through past paperwork and their life expectancy has been raised three years during the past seven years. So, [the research] is definitely making a difference in the life expectancy,” Edmonson explained.

The bulk of the research and drugs to treat the disease are a direct result of the organization's support made up of friends, parents and patients dedicated to finding treatment and a cure for CF. “Virtually every drug that has come out for CF has been a direct result of the Foundation,” Edmonson said. “There may be other people who have it on their radar, but no one is pushing and advocating like the CF Foundation is.” And that includes funding research and expanding the drug development pipeline. Edmonson exuberantly shared that 90 cents of every $1 donated to CFF goes to research – the reason that the relatively rare disease has made such progress in research and treatment.

In 1999, Lori Knight met with a small group of local CF moms and doctors to organize the first Great Strides Walk in Tyler to help raise funds. When the walk was one of the most successful first walks in any CF office, according to Edmonson, the decision was made to add a Tyler branch and to have more local events. Then in Nov. 2005, Christa Drewry became involved with the organization immediately after learning of her daughter Maci's diagnosis at age 3. Christa serves on the CF Board and helped in the success of the 2010 walk, which she reported raised over $140,000 for the Foundation. “I think Christa has doubled our numbers at the walk right now. She had anybody and everybody there and it was such a great, great time,” Edmonson recalled. Both women are actively involved on the board for the Tyler Branch. Edmonson said, “Their passion is really getting the awareness out.”

Even those not so familiar with CF are familiar with all the amazing and positive events that enable the CF Foundation to get the community involved and help fund the search for a cure. In addition to the Annual Great Strides Walk, golf tournament and bike tours – the 65 Roses Gala, chaired by Knight, is scheduled for May 7, includes a fabulous catered dinner, and live and silent auctions. Edmonson explained the phrase “65 roses” was a term used by CF children in the '50s who couldn't say "Cystic Fibrosis."

To them, it sounded like “65 roses.” “So, many of the kids at that time started calling it '65 roses' and now that term has been a huge part of the Foundation lifestyle and verbiage, and that's why it's the '65 Roses Gala,'” Edmonson elaborated.

Drewry explained why the CF Foundation has been so important since it's inception. “The CFF has given us the opportunity to be involved in research for new treatments that will help all CF children … without the Foundation there would be no funding for the research,” she explained. On a local scale, Drewry appreciates the opportunity the foundation gives for the parents to meet other CF parents, network and gain support. However, it's main goal is to develop treatment and find a cure.

Compared to some non-profits that have up to 28 percent administrative costs, CFF's efforts to keep their's at 10 percent is crucial, because it enables 90 cents of every dollar goes to research. “All of that money is going back to the research that they are pushing for new drugs. The pipeline is larger than it has ever been. I think there are about 30 drugs right now,” Edmonson said.

Another unique aspect of the Foundation's setup are the efforts to help patients get the crucial and aggressive treatment they need, which is typically complicated. “It's a different way the Foundation is set up. Not only are they putting money into research, but they actually have a CF pharmacy.” Edmonson explained, “They have care centers – all kinds of different ways they are getting plugged into really helping people get the treatment they need, as opposed to just giving the money to the pharmaceutical companies and saying, 'go make it happen;' there's a lot of accountability and assuring that it happens.”

Approximately 75 offices nation-wide are dedicated to raising funds for research. They also give CF patients a voice to garner support from family, friends and community. Drewry explains how crucial support from the community and friends has been for Maci, who stays active cheerleading with the Spirit of Tyler (pictured). “This group has gone above and beyond being just an activity for Maci. They are instrumental in keeping her focused on staying healthy. Being involved with this group has been such a motivation for her,” she said. “Their constant encouragement and positive attitudes are the drive behind Maci's upbeat outlook on life.”

Edmonson and Drewry both hope for a cure in Maci's lifetime. “Unlike other diseases, we do not have time to sit back and wonder if they're going to find a cure,” Edmonson says. “The fact that we've come this far, like I said [life expectancy] is over 37 years old. About 44 percent of patients are now over the age of 18.”

And more than anything, the future is filled with hope and urgency. “There's not a single person who works for the Foundation, who doesn't know the people that we're working for – the people that we're doing this for,” Edmonson stressed. “And it helps push [for a cure] that much harder.”