Hi Everyone! My name is Ronny Smitley. I’m 27 (28 in April, woohoo) years old 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. Right now, I average at least one hospital stay each year for a “tune up”. This year has been a little unusual, completing 3 rounds of IV antibiotics, thankfully two of those rounds were mostly done at home. Thanks to the continuous research being done, new treatments and antibiotics have been able to keep me healthier and have actually shown improvement in lung function and recovery. I owe many thanks to the research team, my care team at Rainbow, and the support of those involved in the CF community. I have had a very crazy and exciting few years. In May of 2016, I graduated with my Masters in Speech and Hearing from Cleveland State and was blessed to accept a job right away. In the two and a half years since graduation, I’ve experienced many ups and downs that come in balancing work and health. Earlier this year, due to some unforeseen circumstances, I had to make the choice to leave a job that had I had dreamed about since I started graduate school. The struggles I faced leading up to my resignation caused me to truly realize for the first time that my health will always have to come first, dream job aside. I resigned from Euclid in August of this year and embarked on another new and exciting journey! Now I am working a new dream. I accepted a job providing teletherapy with kids in a school (in Alaska!). Teletherapy means that as long as I have a computer and stable internet connection, I can work from anywhere, even the hospital if necessary! The concept sounded perfect for somebody like me, and it has been an even bigger blessing than I could have imagined. I’m able to work a full time job from the comfort of my own home. I wake up, I have time to do my treatments and relax in the mornings, then I make the long commute from the kitchen to my home office to work from my computer. The best part?! I have the joy of helping and working with fun-loving kiddos without the threat of their germs. AND I get to spend extra time with that adorable little girl pictured who calls me auntie (or “A Won-won” in her words)! At my age, I am past the halfway point of the average life expectancy for someone with CF. I owe a large part of my health to the care team I’ve worked with my whole life. In the last few years, research has shown that because the Rainbow Babies and Children’s Hospital CF Care Center is so aggressive with their treatments, the life expectancy of the patients seen here is 7 years longer than the national average. This is not only because of the doctors, but because of the effort put forth by our local Cystic Fibrosis Foundation chapter, dedicated to raising the funds that help the Care Center explore the cutting edge treatments and drug research. The team here truly treats me as if I were their own flesh and blood. I have been involved in the Great Strides CF walk for nearly 25 years. This May will mark my 24th year of being involved with the walk. It is always a fun day to go to the zoo with your family and friends and to help try and find a cure. Rain or shine we always have fun. We have been blessed with many supporters from all walks of life that help us to continually break our goal each year. For the 2019 Great Strides season, I am honored to serve as the Ambassador for our local Cleveland Chapter. This honor is one I happily accepted so that I can share with others all the wonderful things that Great Strides has done for my family and I. 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
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.