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?"

I believe that the greatest unaddressed patient need facing the Cystic Fibrosis community is a significant lack in positive descriptive representation in many areas of society. In politics for example, lack of descriptive representation means that because minority groups do not see themselves in the political sphere, they are less likely to strive to participate in politics themselves. I believe that this is a major issue that faces the CF community. We rarely see people with CF represented in society. And when we do, it is a very romanticized and fear-inducing version of the daily CF experience. People with CF, like myself, could benefit immensely from seeing realistic versions of ourselves in politics, Hollywood, television, sports, Wall Street, the performing arts, and so many other areas. In spite of the diagnosis, persons with CF are doing all of these things and more. However, it would be encouraging beyond words to see ourselves publicized in these spheres on the professional level. This may inspire a person with CF who has given up hope on pursuing their dreams because it seems too far-fetched. In order to make this change, I would partner with the CF Foundation and other organizations that work with the CF community to create an internship program that places people with CF in a variety of professional roles in areas where we see a lack of representation. This would provide tools for advancement for people with CF in these areas.