CF Warrior Emily Schaller Founder/CEO- Rock CF Foundation gives us inside look into the CF Rock Foundation.
Rock CF is a community thousands strong, changing the face of what living with cystic fibrosis looks like and giving those living with CF the tools to not only survive, but thrive.
In 2007 I ( Emily) founded the Rock CF Foundation as a 501c3, but we informally started hosting rock and roll shows for CF in 2004. At the time my oldest brother and I were living together, both immersed in the Detroit rock scene. He was playing guitar in a local band and I was helping them out itching to get into a band myself. After years of attending local CF
Later that year I finally got my dream of playing drums in a band with four of my friends. We continued doing these unofficial Rock CF shows annually while also playing shows two to three times a week in clubs around Detroit. While all of this was great, my health was not keeping up with the party lifestyle I was living. Being in smoky bars for hours on end several times a week, early morning bedtimes, and not keeping up with my meds was really taking a toll. My hospitalizations were increasing, my lung function was decreasing and my health was slipping away, right in front of me.
About the time Rock CF was officially designated as a nonprofit was around the time I decided that I needed to do something about my health.
I did the math in my head and thought I should do my meds more regularly, but I also needed to do something bigger. That was exercise. Block by block I built up to being able to run a mile, then two, and then three. At the same time I also began cycling and started annual fundraising and awareness bike trips. I was finally in control of my life.
Being on my new path with exercise, eventually brought my time as a drummer and rock and roller to an end. The mission of the Rock CF Foundation followed my lead and naturally shifted from using music as a tool, to using exercise as the tool to inform audiences about cystic fibrosis end engage the CF community.
It took a few years for us to get our “legs” and figure out just what we were going to do and where we fit in. Of course we are still evolving and learning, but our main focus today is to empower others with CF and give them the tools lead a healthier life. Through programs like Kicks Back, we donate brand new running shoes to people living with cystic fibrosis. Some may be starting where I started back in 2006, getting off the couch, while some may be experienced runners who just need new kicks to keep them outrunning CF! Since 2014 we have mailed out over 650 pairs.
Though I may not be in a band anymore my love of band merchandise helped spark the internationally recognized line of Rock CF gear. Our merch is sold online and CF awareness is being shipped all over the world.
My dream has come true. I am able to do what I love every single day and am inspired constantly by other CF warriors and families. We are approaching an awesome time for the CF community. I have never been more excited to see how lives will change with the new treatments on the horizon. We will all be learning how to navigate this as we go, and Rock CF will be there every step of the way!
Read more of Emily’s story in the CF Warrior Project Book a portion of the proceeds will benefit the many amazing charities and foundations started by the CF Warriors in the book.