My name is Ronny Smitley. I’m 30 (WOAH) 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.
Up until a year ago, I was averaging at least one hospital admission 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 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. Until the start of Trikafta, 30 was an age I was very hesitant to look forward to, thinking I might not make it. Now, not only did I make it here, but I am at my healthiest and happiest I have ever been! I am able to work two jobs doing what I love, adventure with my boyfriend, keep up with the little ones (both my nieces and my boyfriend's daughter), and have the energy to manage two rambunctious puppies!
While this new drug had been a total game changer for me and many others, it is still not a cure. There are still 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 been involved in the Great Strides CF walk for nearly 30 years. This May will mark my 27th 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. While the walk may night be happening in the traditional sense (thanks COVID), that does not mean we will stop the fight! The walk is still an opportunity to step out and show that we are better together, even apart.
Each year I participate, whether virtual or in person, 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.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.