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?"

Cystic Fibrosis (CF) patients undergo many different experiences throughout their lifetimes. However, every CF patient has undergone isolation, unable to physically interact with other CF patients. Therefore, virtual connections are highly important and deserve additional effort toward customization and improvement. During my transition from high school to college, my pulmonary team suggested a mentor, handing me a single phone number of a volunteer mentor. My mentor, although helpful at times, was unable to relate to my transition to college; we had completely different experiences. It felt more isolating knowing we couldn't always relate. I honored our differences, but I always wondered why there wasn’t an established network that matched kids and teens to mentors with similar life experiences. I’d like to inspire a network that focuses on a mentor-mentee relationship, providing a safe, online space. To do this, I would partner up with GEHA, a medical company, which would assist in matching the privately submitted bios of possible mentors and mentees. The participants would be required to sign privacy and etiquette regulations, ensuring HIPAA rights and personal safety. Early diagnoses, PICC lines, lung transplants, feeding tubes, CF with diabetes, home and hospital settings, etc. are all completely different experiences. People undergoing these specific experiences need support; someone who can understand. Current networks lack the ability to customize connections, and this network would have a unique focus on mentor-mentee outreach. This new network would provide specific mentors giving youth a customized support system working to decrease isolation.