It’s Expensive to Be Sick: What I’ve Learned Working at Claire’s Place

Julia Johnson, Communications Assistant

Hi, I'm Julia Johnson, and I work at Claire's Place Foundation as a communications assistant. I started volunteering in 2024, before being given the opportunity to assist with the digital side of Claire's Place, where I slowly learned what it's like to work at a grassroots nonprofit and also within the CF community. Like many others who don’t have CF or know someone personally affected by it, I first heard about the disease through its portrayal in popular media. However, those portrayals of CF did not show the financial burden of the disease; they did not show how it can bury people and families into financial debt. 

It was not until I began working with the Extended Hospital Stay program that I realized how costly CF can be financially for individuals and their families. It is not uncommon for CF patients to be hospitalized for months at a time, placing a continuous financial drain on them and their families. Sometimes even, those living with CF are at risk of being evicted while being in the hospital. These financial issues take a massive toll on both their mental health and their family’s, all while they continue to adapt and respond to a rare, challenging genetic chronic illness. 

Working in this program taught me the importance of our fundraising efforts and the real, tangible impact they can have on our applicants. This program can be the difference between eviction and not worrying about rent or mortgage for one month. That worry can turn into a focus on getting better or being with their loved ones in the hospital. It's essential to remember that donating can make a significant difference in our applicants' lives, and that being sick should not have to be expensive. Donating to the Extended Hospital Stay Program can give them a chance to catch up on bills, focus on school, or take one more mental load off their shoulders as they adjust to this new version of normal.

Find out more about a recent family that was supported by our Extended Hospital Stay: Orvaughn’s Story