Karen Callan and volunteers with the Southern Arizona Chapter of the Cystic Fibrosis Foundation are breathing new life into a favorite fundraiser:
The Breath of Life Gala will kick up its heels and become Roundup for a Cure: An Evening in the Old West at 6:30 p.m. Sept. 17 at Old Tucson Studios, 201 S. Kinney Road.
“We decided to change it up and revitalize the event and make it more Tucson ... the evening is a little bit different. It will not follow the traditional gala formula. We are telling people to grab your boots, chaps and cowboy hats and come out to socialize, eat and enjoy an evening under the stars in the Old West. We hope that people will want to come and be part of it,” said MeMe Aguila, Southern Arizona Chapter development director.
The local chapter is one of more than 70 nationwide affiliates of the foundation started in 1955 by a group of parents determined to find a cure for cystic fibrosis, a life-threatening genetic disease that affects primarily the lungs and digestive system.
More than 1,800 gene mutations can cause CF, which impacts about 30,000 people nationwide. The defective genes result in a build-up of thick mucus in the lungs, pancreas and other organs; common symptoms include persistent coughing, wheezing, shortness of breath, frequent lung infections such as pneumonia or bronchitis, poor weight gain and digestive problems.
Aguila said that foundation-funded research has made significant progress since 1989 when the defective CF gene was identified. Major breakthroughs have occurred in medications and treatments, particularly in the past few years, and a cure is within reach.
“In 1955, the mortality rate for someone with cystic fibrosis was 4 years old; most kids didn’t live past that. Today, the average life span is in the 40s and 50s. We have people living well into their 60s and 70s with CF, so you can see the strides the foundation has made. Our new goal is helping people who are living longer to have better quality of life,” Aguila said.
That goal is a major incentive for Callan, co-chair of the upcoming fundraiser with Michelle Ijams.
Callan’s links to CF go back many years: Her aunt was the first director of the local chapter and then a friend had a granddaughter with CF. Other colleagues had family members with CF as well, but the connection became even more personal when her granddaughter, Ellis Rose Quesada, now 5, was diagnosed with the disease.
“We had never had CF in our side of the family. If is just one of those rare, strange connections ... but the good news is that the specific gene mutation that Ellis Rose has can be treated by a drug that came out on the market a few weeks after she was born. The drug, kalydeco, is a life-changer and she is doing very well. In spite of the fact that she is going through this, we are very blessed that she has medication that really helps,” Callan said.
Callan said the pace of research over the past decade has been gratifying for everyone who supports the Cystic Fibrosis Foundation. She said the research has ramifications not only for those living with the disease and their families, but for the 10 million people who are carriers of gene mutations that can cause CF.
“The solutions are coming quicker now. It used to be years before anything would change and now because of Vertex Pharmaceuticals (developer of kalydeco and orkambi, another medicine used to treat CF) and technology and investments in research, the chances of finding a cure are rapidly arising,” Callan said. “It is not if it will happen, but when it will happen and that is very, very exciting. I also love the fact that when they do research and testing they find things that can help other diseases besides CF.”
Callan credits the momentum of research and services provided by the Cystic Fibrosis Foundation to a network of incredible individuals, families and businesses.
“I have been on lots of boards in different arenas and there is just something about this community of people that is hard to put into words: It is just unique. These are wonderful people and families who are interested and involved and community-oriented,” she said.
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