Two-week hospitalizations. Breathing treatments four times a day. Taking enzymes with every meal. Life with cystic fibrosis is anything but easy. Here at Streetlight, we have a Cystic Fibrosis Team that is educated about, and committed to, our friends with cystic fibrosis. So what does that support look like?
Two week “tune-ups,” or hospital admissions, can occur several times a year for those with CF. While at Shands, they can hang out with a Streetlight member while roombound.
Transitioning from Pediatric to Adult Care
For our patients transitioning from pediatrics to adult care, we wanted to celebrate the past and future relationships in a cool way. So, we decided that to acknowledge the shift, we would make a yearbook complete with all of the people our CFers would have met in Peds (doctors, nurses, etc), as well as the people they are going to meet in adult care. The best part? Graduates get their own personal spread in the yearbook. The journey through pediatrics is a big deal. The next step to adult care can be daunting. We like to celebrate the landmark, help introduce the new players, and continue supporting our CF friends on the adult floors.
Every CF patient transitioning from pediatric to adult care gets a free meal at BJ’s Brewhouse shared with a family member, their Streetlight friend, a pediatric staff member, and an adult staff member. And just so you know, BJ’s Restaurant Foundation is a non-profit organization dedicated to supporting charities benefitting children’s healthcare and education, with their primary focus being the Cystic Fibrosis Foundation. Through their ‘Cookies for Kids’ program, they make a donation to the CF Foundation for every Pizookie (an amazing cookie and ice cream desert) purchased.
The Cystic Fibrosis Team united to design a shirt unique for our community. The color purple and roses are important symbols for CF so we integrated them into our “Inspirations and Exahalations” shirt. Make sure to ask your Streetlight friend for a CF shirt.
Great Strides and Cystic Fibrosis Awareness Month
Our Streetlight Cystic Fibrosis Team participates in and fundraises for the Cystic Fibrosis Foundation’s Great Strides 5K annually. The event includes the walk, games, raffle prizes, and great free food at Albert Ray Massey Westside Park in the month of April. The team also organizes awareness and fundraising events in the month of May for Cystic Fibrosis Awareness Month.