Meet the 2020 Scholars

"What do you believe is the greatest unaddressed patient need in the CF community, and if you could, how would you try to fix it? Who would you partner with (e.g. public figure, organization) to help fix the issue and why?"

Overall, I believe that the CF community does a lot to address the needs of its patients and create a network where patients can communicate effectively with their care team and other CF patients. However, I think the greatest unaddressed patient need is the outdated information that the public still believes about the life of a CF patient. As a 21-year-old CF adult with an almost normal lung function, I still have people approaching me asking if my life expectancy is at 25 and treating me as if I am critically ill. Many people are not aware of drugs that are being created and what they're doing to increase lung function and the overall health of CF patients. Movies and other forms of media continue to appropriate the standard that people born with CF have no choice but to pass away at a young age even though median life expectancy is rising every year. As a theatre artist, I would like to use my craft to spread the truth about this through creating performances and directing plays that display that while CF patients do fight hard for their health, they are stronger and more resilient than ever. I believe better public relations and promoting the fact that the CF community is so close to getting treatments and a cure to patients, especially for the funds that the community still needs to deliver these results to patients.