My name is Ronny Smitley. I’m 33 years old (34 in a couple weeks!) living in Cleveland, home sweet home! I was diagnosed with cystic fibrosis when I was about 8 months old. Obviously, I remember very little of the early years, but I can tell you what it has been like more recently.

 

Up until 2019, I was averaging one to three hospital admissions per year for a pulmonary "tune up." That all changed in October of 2019 when the FDA approved Trikafta, the latest in a string of successful gene modulators. This new medication completely changed my life for the better. For the first time, I was able to train for and successfully run a 5k, I began playing volleyball again, I was able to gain and maintain a healthy weight, and I was able to begin to plan for my future with less worry that my future would be cut short.

 

Unfortunately, in the past couple of years, I have been humbled and faced with the stark reminder that Trikafta is not a cure. I have been faced with some of the biggest challenges of my adult life with regards to my health. Due to some new lung bugs and increasing GI complications, I spent more time in the hospital than I had since beginning Trikafta. In 2023, I was faced with difficult news and difficult decisions, including the decision to leave my full-time dream job. As challenging as it was, I am now able to take the time to focus on my health and ensure I thrive without the added stress of a 40-50 workweek. Despite these new challenges, I continue to have hope! Without Trikafta, and other new and developing treatments, the past couple of years may have had a very different outcome, and for that I am beyond grateful. 

 

While this new drug has been a game changer for many, it is still NOT A CURE. There are many CFers out there who cannot benefit from it for one reason or another. There are others still who we lost before they had the chance to see their "Trikafta Day." For this reason, we continue to fight daily. For these people, we shout even louder for a cure to be found. 

 

I have participated in the Great Strides CF walk since I was 3 years old. That means this year will mark my 31st year of being involved! It is always a fun day to go to the zoo with your family and friends, to help raise awareness, and fight together find a cure. Rain or shine we always have fun. The walk is an opportunity to step out and show that we are better together, we fight as one for all who are affected. 

 

Each year I participate, I am reminded that I am never alone in my fight to breathe. Events like Great Strides unite people from all walks of life who have been affected by CF in one way or another. Patients, family members, friends, and caregivers all come together to show support and raise awareness. Each year brings something new. Whether it be new research announcements or new challenges to be faced, each year is met with new faces to help offer support. I have built lifelong friendships with people that I initially met at the walk here in Cleveland. Those friends are the people I turn to when I face new struggles in my fight.

 

I encourage you to reach out and get involved. Remember, you are never in this battle alone. As fighters, we need each other to help make CF stand for “Cure Found” and to help make CF a thing of the past.

 

Breathe easy, fighters!

Ronny Smitley