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?"

The greatest unaddressed patient need in the CF community is creating a more effective and engaging way to teach children/teenagers how the disorder impacts his/her body and health. During my first meeting with my adult CF doctor, he showed me (through visual demonstration) how my lungs were different and how certain treatments helped my body. Because of this knowledge, I became more motivated to use these treatments to help diminish the effects of my disorder. If we attempt to teach youth with CF about the physical alterations in their bodies, they may realize the importance of consistently taking their medication and performing treatments. One way we may teach CF patients is by having them participate in educational programs that have a more engaging curriculum that would be appropriate for the child’s age (such as a coloring book for preschool children, some type of interactive video game for older children, etc). Another idea is an online mentorship program. With this, younger patients would be paired with older patients who have had similar experiences in their lives. This would give younger patients the opportunity to safely bond with and learn from older, more mature patients. Organizations such as the CF Foundation and the hospitals which the patients visit could help with these programs as they have already taken steps to teach patients about CF. I believe that if the CF Foundation promoted these programs, people would take them seriously and use them to the benefit of younger CF patient health.