Each year, Upopolis runs Camp Fromaway, a virtual summer camp for children living with cystic fibrosis (CF). CF is a genetic condition that causes the body to produce thick, sticky mucus—especially in the lungs and digestive system—leading to serious health complications.
While treatments have improved, kids with CF must manage daily medications, physical therapy, and frequent medical appointments. Due to cross-infection risks, children with CF can’t safely spend time together in person, making virtual spaces like Camp Fromaway vital for connection, support, and fun.
Below, campers share their thoughts and experiences from Camp Fromaway last summer:
Q: How does having CF impact your life?
“CF affects my life in many ways. For example, every morning I do my physio (also called PEP). I do six rounds twice a day, which takes about 15 minutes each time. It’s even harder when I wake up late!”
“CF impacts my life daily—it’s a constant companion. Treatments, meds, and appointments shape my routine, often limiting spontaneity. But it’s also taught me resilience and made me passionate about advocacy. I live each day fighting not just for myself, but for all CFers. Though it’s difficult, it’s made me stronger, determined, and part of a global community. It defines me—not just as someone with CF, but as a survivor and advocate.”
Q: What was the most fun camp activity?
“My favorite activity wasn’t from last year, but the year before—when we received daily snacks! I really enjoyed that and hope to see it come back in future summers.”
Q: What was it like talking to other campers with CF?
“I enjoyed talking to others with CF because I didn’t feel like the only one. It was comforting to hear about other people’s experiences and know that I’m not alone.”
Q: What did you take away from Camp Fromaway last summer?
“One of the greatest things I took from Camp Fromaway was a sense of belonging, empowerment, and acceptance. Life with CF can be isolating, but at camp, I was fully understood. People got my struggles and my successes. It strengthened my advocacy passion—hearing different CF stories was so inspiring. Camp wasn’t just a summer break; it was a reminder that we’re stronger together, even from afar.”
“Last summer, I learned that even though we all have CF, it affects each of us differently. Hearing others’ stories helped me understand CF better and feel less alone.”
Q: Did camp give you new tools or tips to help manage CF better?
“Yes! I learned how to make paper lungs to see how they work, how to calm my lungs, and different breathing techniques to improve my lung capacity.”
Q: Do you plan to go back to camp next year?
“Definitely! I’m already counting down the days until I get to go to Camp Fromaway again next year! It was such a supportive and positive experience, and the connections I made were invaluable. Being around other people who understand CF on that personal level, and who also share my passion for advocacy, was invigorating. My plan for next year is to build on the connections that I made and help bring even more attention to the issues that we have as a CF community. It’s something that I wouldn’t trade for the world.”
Q: Why is having a community important when you have CF?
“Having a community when you have cystic fibrosis is just necessary—emotionally, mentally, and politically. CF is isolating, and community fills that gap. It’s where we don’t have to explain ourselves, and where shared experience becomes instant common ground. That kind of bond heals in a way medicine can’t. And together, we’re powerful—we fight for access, awareness, and policy change. Alone the fight is hard. Together, we’re a force. In a world that forgets orphan diseases, the CF family means we’re never alone.”
Q: If there was one thing you wanted everyone to understand about CF, what would that be?
“CF isn’t just a lung disease—it affects nearly all organs: pancreas, liver, intestines, reproductive system. It’s not just treatments and doctor visits; it’s a full-body battle. But we’re not our disease. We have hopes, dreams, and full lives. We’re working, studying, and fighting for change. Understanding our complexity and strength is essential for the next stage of advocacy.”
This year Camp Fromaway will be held from July 14th-18th!To register please click this link: https://forms.gle/J4trQFAEr8rEspXA6.