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cystic fibrosis.

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connection across the globe.

Dancing Together with Cystic Fibrosis® (DTWCF) is a virtual dance class designed for people living with CF and their community including friends and family. Adaptive assistants are available providing lower or higher aerobic intensity and seated options. No prior dance experience necessary. All ages and welcome. 

West African Dancer and Drummer

Suzanne Ryanstrati founded Dancing Together with CF in 2019 with special thanks to Amanda Killen for her inspiration and guidance, and the Cystic Fibrosis Foundation for their support through an Impact Grant.  Ryanstrati and lead instructor Nora Burkitt attended training with Killen and BEAM Feel Good to develop this program. 

 

Image: Vanessa Gibbs, West African 

Cystic fibrosis (CF) is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.  

Source: Cystic Fibrosis Foundation

why I dance.

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"Dance is a language that everyone can speak. It allows me to shine through and freedom to be me."

Linda,  DTWCF Student

inspiration.

amanda killen.

This progam is inspired by Suzanne Ryanstrati's friend and former dance student, Amanda Killen.

 

Amanda is an actress, singer, dancer and professional choreographer in the Kansas City Metropolitan area.

She was an essential part of the planning and develoment of DTWCF, and was a founding faculty member.  Her passion for dance and the performing arts is why DTWCF was founded in hopes that people with CF can dance together instead of seperately.

my story.

"My name is Amanda Killen and I have Cystic Fibrosis. I was diagnosed when I was three years old, and I have done breathing treatments and taken pills every day since. I have been in and out of the hospital for as long as I can remember, but I figured out ways to work around it. I have CF, but it doesn’t have me. 

When I was diagnosed, the doctor told my mom I probably wouldn’t live past high school. But here I am, 25 years old and living every day to the fullest. I have graduated high school, graduated college, travelled the world, and even recently got married to my best friend! I am a professional choreographer (check out Killen It Choreography on Facebook ☺️) and have worked with many different organizations ranging from community theater, to Pom squads, to high school theater departments, to show choirs. I love what I do! So much so that my “work” doesn’t feel like work!

 

Through all of these adventures, I have managed my CF to the best of my abilities. I’ve done homework and taken tests while I was in the hospital, performed in front of my entire college with my MIC-Key button on display, and even packed my breathing treatments all the way to Australia. My mom always taught me to make the best of every situation, and that’s exactly what I’ve done. We even made going to St. Louis to be evaluated for a double lung transplant a fun adventure by visiting the arch and going to a casino for the first time. I was to the point of almost being listed for transplant when I was lucky enough to start Trikafta, which has since changed my life! Because of this new medication, I went from preparing for an intense surgery to now running in the Brew To Brew relay! 

 

I have CF, but I am so much more! Can’t wait to see what adventures are in my future! 🤗"

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