Doin' It Fer Jules!
Kelly Mordaunt
Fundraising for Buffalo Great Strides 2026
Kelly Mordaunt
Julia was born in February of 1981. I was too young to remember her birth - we are only a year and a half apart! To me, we have always co-existed. In 1981, the life expectancy of someone with cystic fibrosis was just 18 years old. No one knew Julia had cystic fibrosis yet.
In 1989, while we were out riding bikes and making boondoggles in the park, there was a breakthrough finding in a research laboratory not too far away – the identification of the cystic fibrosis transmembrane regulator (CFTR) protein - a crucial protein involved in the regulation of chloride. When this protein is not made correctly (or at all) it leads to a dangerous build-up of thick mucus in the lungs, pancreas and other organs. It's the cause of CF.
A year later in 1990, there was proof that restoring the defective CFTR activity was possible! Of course, we had no idea how any of this would later affect us.
In the ensuing years, during family camping trips and cheering Julia on at her baseball games, scientists were able to identify more than 1,700 CF gene mutations.
Then in 1994, we got the devastating news: it was much more than asthma that Julia had been struggling with. She had a rare, genetic disease called cystic fibrosis. We were told that with treatment, the new median predicted age of survival had climbed to 30. New inhaled hypertonic saline treatments were available to her. Drugs that could directly target the defective CFTR gene were still in their developing stages, however.
During the next few years I began to realize a few things. I learned that back in the 1950s, children with this disease didn’t survive past their 10th birthday. I learned that the life expectancy had been steadily climbing due to treatment development and scientific research funded by the nonprofit organization called the Cystic Fibrosis Foundation.
They are the reason Julia is still here.
Today, the life expectancy for someone with CF has improved dramatically, with a new median predicted survival age of 65 for those born between 2020-2026. Modern modulator therapies have transformed CF into a manageable chronic condition, allowing many to live into their 60s, 70s, or beyond! However, this figure doesn't include older patients like Julia - those born in the 1980’s and 1990’s who did not benefit from these newer, transformative treatments earlier in life.
While the advancements are astounding, the painful truth is that cystic fibrosis is still incurable, and still cuts lives short.
It’s more crucial than ever that we continue the development of drug therapies, including alternatives to antibiotics for adult CF patients who battle recurrent lung infections and develop resistance. We must expand our knowledge of the underlying biology of the disease and its long-term effect on the body. And we must continue to fund the development of gene editing therapy, which I believe will be the key to a cure!
This past September, Julia began the groundbreaking medication Alyftrek, a CFTR modulator which essentially corrects the faulty CFTR protein on a cellular level, promising improvement in lung function. These types of drugs were mere possibilities when she was diagnosed back in '94!
Sometimes I catch myself saying things like, “my sister is one of the lucky ones” - maybe so - but really, it's science. It’s research. It’s your donation to the Cystic Fibrosis Foundation!
Please consider helping us smash our big MILESTONE GOAL this year. Even if it's a dollar - it moves us closer to the ultimate goal: to see a cure for Cystic Fibrosis in our lifetime - a cure fer Jules!
In 1989, while we were out riding bikes and making boondoggles in the park, there was a breakthrough finding in a research laboratory not too far away – the identification of the cystic fibrosis transmembrane regulator (CFTR) protein - a crucial protein involved in the regulation of chloride. When this protein is not made correctly (or at all) it leads to a dangerous build-up of thick mucus in the lungs, pancreas and other organs. It's the cause of CF.
A year later in 1990, there was proof that restoring the defective CFTR activity was possible! Of course, we had no idea how any of this would later affect us.
In the ensuing years, during family camping trips and cheering Julia on at her baseball games, scientists were able to identify more than 1,700 CF gene mutations.
Then in 1994, we got the devastating news: it was much more than asthma that Julia had been struggling with. She had a rare, genetic disease called cystic fibrosis. We were told that with treatment, the new median predicted age of survival had climbed to 30. New inhaled hypertonic saline treatments were available to her. Drugs that could directly target the defective CFTR gene were still in their developing stages, however.
During the next few years I began to realize a few things. I learned that back in the 1950s, children with this disease didn’t survive past their 10th birthday. I learned that the life expectancy had been steadily climbing due to treatment development and scientific research funded by the nonprofit organization called the Cystic Fibrosis Foundation.
They are the reason Julia is still here.
Today, the life expectancy for someone with CF has improved dramatically, with a new median predicted survival age of 65 for those born between 2020-2026. Modern modulator therapies have transformed CF into a manageable chronic condition, allowing many to live into their 60s, 70s, or beyond! However, this figure doesn't include older patients like Julia - those born in the 1980’s and 1990’s who did not benefit from these newer, transformative treatments earlier in life.
While the advancements are astounding, the painful truth is that cystic fibrosis is still incurable, and still cuts lives short.
It’s more crucial than ever that we continue the development of drug therapies, including alternatives to antibiotics for adult CF patients who battle recurrent lung infections and develop resistance. We must expand our knowledge of the underlying biology of the disease and its long-term effect on the body. And we must continue to fund the development of gene editing therapy, which I believe will be the key to a cure!
This past September, Julia began the groundbreaking medication Alyftrek, a CFTR modulator which essentially corrects the faulty CFTR protein on a cellular level, promising improvement in lung function. These types of drugs were mere possibilities when she was diagnosed back in '94!
Sometimes I catch myself saying things like, “my sister is one of the lucky ones” - maybe so - but really, it's science. It’s research. It’s your donation to the Cystic Fibrosis Foundation!
Please consider helping us smash our big MILESTONE GOAL this year. Even if it's a dollar - it moves us closer to the ultimate goal: to see a cure for Cystic Fibrosis in our lifetime - a cure fer Jules!
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