Rose-Up CrossFit CommunityWOD (CF for CF)
Read about Katie’s journey with Cystic Fibrosis
Cystic fibrosis (CF) is a progressive genetic disease caused by a defective protein that leads to thick mucus buildup in the lungs, digestive system, and other organs. Historically, this is a condition where end stage of the disease typically requires lung transplantation. While treatment advances have significantly improved outcomes, there is still no cure.
I was diagnosed right after I was born in 1997. At the time, life expectancy for someone born with CF was less than 30 years. By my early 20s, I had spent nearly 24,000 hours, or about 2.5 years of my life, managing CF through breathing treatments, medications, and hospitalizations.
In 2019, during my junior year of college, I received news that soon changed many CF lives, including mine. Trikafta, a ground-breaking medication for many patients with Cystic Fibrosis that works to target defective protein had been approved. Since this advancement, I have been hospital free went from 60% to 80% lung function. These were numbers I had not seen in over a decade with an opposite trajectory than that typically seen in CF. While the physical benefits have been remarkable, the greatest gift has been a new outlook on my future and what may be possible.
Throughout my life, CF has shaped who I am, teaching me resilience, discipline, and perseverance. It has also shown me the importance of community and how much a strong support system can make difficult days feel possible.
This year, I was asked to serve as the Central Ohio CF Ambassador for Rose Up. Rose Up is a national fundraising event led by adults with CF to support research, advocacy, and the pursuit of a cure. When asked, I wanted to bring together another community that shares the same philosophy of showing up for yourself and others, doing hard things, all while pushing forward stronger. Over the past year, CrossFit and the people at this gym have become a source of friendship, support, accountability, and personal growth. What started as trying something new quickly became one of my favorite parts of the day.
With a special thank you to Coach Katelyn and Coach Mike, a special Community WOD is CF for CF. Throughout the workout, teams will complete rounds, reps, and challenges inspired by meaningful CF facts and experiences, helping raise awareness while honoring the resilience of those living with cystic fibrosis.
10 Facts About Cystic Fibrosis
1. 65 Roses® is widely used by the Cystic Fibrosis Foundation and CF community in fundraising, advocacy, and educational efforts. The nickname originated from a young child with cystic fibrosis in the 1960s who listening to his mother discuss cystic fibrosis with others and thought she was saying "65 Roses." This is where today’s event gets a play on its name!
2. Approximately 40,000 people are living with cystic fibrosis in the United States, and 100,000 are living worldwide.
3. Some people with CF spend 2 to 3 hours per day on treatments and disease management activities.
4. More than 60% of people with CF in the U.S. are now adults, reflecting major improvements in survival. While life expectancy was the early 30s in the 2000s, this increased to the mid-40s around 2015 and now for those born today, median life expectancy is in the mid-60s and growing.
5. CFTR modulator therapies are a class of medications designed to improve the function of the defective CFTR protein that causes cystic fibrosis. Development of the first CFTR-Modulator through FDA approval to reach patients took 20 years.
6. Current CFTR modulator therapies are available to approximately 95% of people with CF in the U.S. following expanded FDA approvals.
7. Thanks to medical advancements such as these, lung function for CF adults in their 30s is now a median of over 80%.
8. However, 5% (or 1 in 20) still are ineligible based on their mutation or side effects for these life changing medications.
9. For those without modulator therapies, life expectancy remains approximately 2 decades earlier.
10. According to the CF Foundation, there are currently more than 30 potential CF therapies currently in the drug development pipeline, including next-generation modulators, gene therapies, RNA therapies, and gene-editing approaches aimed at expanding treatment options and ultimately reaching every person with CF.