A month ago, over 400 people participated in Rock CF’s annual Pure Detroit 5k, a run in Detroit's beautiful and historic New Center and Boston Edison areas to raise funds to improve quality of life for people living with cystic fibrosis (CF). Founder and organization leader, Emily Schaller, shares her personal story, how the organization has grown, as well as how exercise can help people with CF.
Music has always been a big part of my life. I’m a (retired) drummer, both of my brothers are guitarists and my dad was a music teacher - we loved playing together. The idea for Rock CF began in 2004 when I wanted to raise awareness for cystic fibrosis (CF) in a cool way for people in the 18-35 age group. CF is a rare genetic chronic disease that affects the lungs and digestive system, making it hard to breathe and absorb food. My oldest brother was in a band at the time called South Normal, so we put on a rock concert called "Just Let Me Breathe" that raised thousands of dollars for the CF Foundation. After that first concert, my friends and I created Hellen, a Detroit-based 5-piece girl band!
It was so exciting both to raise the money and to encourage people with CF to feel empowered. I was already speaking at schools and at events for the CF Foundation, but I wanted to do more. In 2007, I officially founded The Rock CF Foundation to focus on increasing the quality of life for people with cystic fibrosis, utilizing the arts, entertainment, fashion and fitness to support research initiatives and heighten public awareness in the fight against cystic fibrosis. In addition to our programming and events, we support the CF Foundation’s endurance events in the Great Michigan area, exercise-based research around CF and a number of other non-profit organizations.
10 years later I can’t believe how much we’ve grown. We’re working on so many different things right now – particularly on the exercise side of the fight against CF. While we work with CF centers all over the US, we most frequently collaborate with the three closest CF centers within 3 hours of Detroit, delivering our gear and services to them and also helping them to advocate for CF healthcare policies at the state level in Michigan. Additionally, we’re starting to talk with doctors at the Mayo Clinic about the importance of exercise for CF patients and how doctors might prescribe exercise as an added therapy.
Our main fundraiser is our annual Half Marathon- this year we had 2,500 participants and raised over $120,000. We had people come from all over the country and even from abroad. Besides the various runs we help organize, like the Detroit 5k this past weekend, one of our other main activities that we’ve been working on since 2014 is our Kicks Back program which donates running shoes to people with cystic fibrosis and registers them for a race of their choice. We’ve donated over 400 pairs of shoes since we started. We’ve really found that both the exercise itself and the running community it creates has been helpful to people in the program. We actually just launched a new pilot wellness program with a company in Montana to help people get on track with not just their fitness and physical wellbeing, but also with mental/emotional support. We’ve had great feedback and are looking to expand the program further.
What a lot of people don’t realize is that CF can be very isolating. New research shows that if people who have CF spend time together, they can pass bugs to each other. That’s why we started this program, to give people a community and the support that they need. There’s already a great community online for people to share their stories and inspire each other, so we wanted to contribute to those efforts.
I personally started running 10 years ago. The first time I ran, I set out to run 2 miles, but only managed 1 block and coughed everywhere. Block by block, I kept going every day though and 3 months in, I was running much better and I felt better too. The running community is one of the main reasons I get up every morning. I love getting to know people and their stories- whether they have CF or not. Runners are awesome and having a running group is the best – they hold you accountable!
My long-term hope for this foundation is that we won’t need to be around anymore because CF will be cured. The science is getting better and better and CF patients are living longer than ever. But for the moment we’re still fighting and trying to keep people healthy and active. If you want to be involved in the fight against CF, anything you can do helps. Like us on Facebook, Twitter or Instagram, volunteer at one of our events, wear one of our t-shirts to spread awareness about what we’re doing – it all really makes a difference!
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