Katrina Young

24 years ago, we made a promise to ourselves - and our son. We promised that we would always walk until we we had a cure for his disease. 24 years ago, our son, Sean, was diagnosed with cystic fibrosis, a chronic, progressive, and ultimately life-shortening disease. At the age of only two, he was given a life expectancy of only 30.

Today Sean is 26. He just finished his second year of Dental School. He is happy, healthy and actively living the life we dreamed he would have. But all of those accomplishments have come from an extraordinary amount of hard work and generosity.

Three years ago, the FDA approved a therapeutic drug that treats the underlying genetic defect of cystic fibrosis. While not a cure, it essentially holds back the progression of the disease. To put this into an everyday context, Sean does not cough any more. His lung function and weight are the highest they have ever been. He has not been hospitalized for a lung infection in over three years.  More than once, Sean has mentioned that sometimes he forgets that he has cystic fibrosis.

But I have not… Nor have I forgotten the promise we made the morning he was diagnosed. On June 1st, we will walk for our son in hopes of finding a cure for cystic fibrosis. And we walk for all those who do not benefit from current therapies. Trikafta benefits approximately 90% of the CF population and even those taking the drug still face daunting medical issues. While Sean's health has stabilized, he still takes handfuls of digestive enzymes and is still diabetic (a common complication of CF). As a mom, I can't help but want everything for my son. As a volunteer for the CF Foundation, I know that hope is a very real possibility. 

The money we hope to raise this year will go towards groundbreaking medical research: mRNA therapies, gene therapies, infection control therapies (such as phage therapies and new antibiotics), and more. All of this research can and will aid other diseases and illness, as well. I started walking and volunteering for the CFF out of my love and concern for my son. I continue to walk because I want to give others what I have been given (a life-saving therapy for my son). 

We will not stop walking and we definitely will not stop raising funds and awareness until EVERYONE living with CF has hope for their future. It is too important not to. And we are too close to achieving what was once thought impossible. Together we can and will make CF stand for "Cure Found."