As a member of the Information Technology (IT) Department at the Cystic Fibrosis Foundation, I get the amazing opportunity to help bring together people with cystic fibrosis, care center staff, CF Foundation employees, researchers, families and many others through all different kinds of technologies. One of my favorite parts of the job is that our technology projects span all different departmental areas, so I get to see so many different aspects of the work we do at the Foundation. On the flip side, however, this also means that I often don't get to interact directly with the CF community and the people who battle CF every day.
This is why the CF Foundation Speaker Series is so meaningful to me. On any given day, my fellow team members and I are completely focused on the tasks at hand -- testing a website enhancement, meeting a critical launch deadline or working with our developers to plan out a new project. It's easy to get lost in this world so that day to day, cystic fibrosis can seem nebulous or intangible.
The Speaker Series reinforces the fact that CF is not only real but pervades every part of life for people with CF, such as motherhood, fitness, work life and love life. CF is not something that the people who live with it have the luxury of forgetting about when they're in the throes of daily life. That can make CF sound scary and debilitating, but Sara Dun and her husband, Michael -- the most recent speakers in the CF Foundation Speaker Series -- made life with CF sound like … life. As they often reiterated, “it is what it is.”
That's not to say that Sara's description of her life with CF made it sound like a breeze. In fact, her story of unwavering commitment to her CF treatment regimen, the hours she spent finding the best health care providers for her and the struggle to build the family she so desperately desired conveyed the exact opposite. But as I followed Sara through her story -- from learning at the age of 14 that she had already surpassed the predicted median age of survival for someone with CF, to getting a lung transplant and running a half-marathon less than a year later -- I couldn't help but be struck by her perspective on life. Sara is someone who described recovering from a surgery that split her entire chest cavity apart as “pretty painful,” the same way I would describe a sprained ankle or a sore throat. And even when her health dipped, Sara was so driven to exercise that she ran an oxygen line out to the pool so that she could swim laps.
Hearing stories like Sara and Michael Dun's is what makes the work we do at the CF Foundation so powerful, and is why the Speaker Series matters to me so much. The series isn't just a chance for us to see that CF is real or worthy of all the hard work being done to eradicate it, although it is. It's a chance for us all to see that the people who fight CF everyday are tough as nails and refuse to be defined by their disease.
When CF speakers come in, we walk out reinvigorated, inspired by our connection to people like Sara, excited to get back to the important work at hand and honored to be a part of the CF community.
