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 proper social support amongst teenagers and young adults. To touch upon this, as I got older and sicker, I started searching for a support system. Yet, because of the social distancing guidelines in place for patients with CF, I was never able to interact with people that were going through what I was experiencing. When looking online to find support, all I saw were forums or random groups by people I didn’t know if I could trust, and nothing felt personal. I would go about fixing this by starting an organization dedicated to creating a truly safe space online for these individuals to get to know each other and interact. The only way to gain access would be through an application process and confirmation by a physician that the person has CF. Groups would be composed based on age (ex. 13-18), with patients transitioning into different groups as their age increases. Video chats and other online events can occur to cultivate a supportive environment. A mental health professional would be the face of these groups. The organization would partner with hospitals and the CF Foundation, as well as anyone willing to support such a righteous cause. The bulk of the CF community is affiliated with these two organizations. As far as getting others support, I reason, people would be sympathetic to the exorbitantly high mental health issues amongst CF patients. Together we can change the statistic.