How Cystic Fibrosis Has Changed Our Lives
May is Cystic Fibrosis (CF) Awareness Month and a time for us to reflect on how well we are doing on improving the approaches to fitness for individuals with CF. Just a little over six years ago, the idea of the institute came to be. The integration of a multidisciplinary exercise approach was relatively new back then, but over time, increased research and knowledge about the benefits of looking at exercise programing through multiple lenses, such as at cardiopulmonary, neuromuscular, biomechanically, psychosocially, etc. has developed. Over the course of the last six years, we have worked with some amazing individuals with CF and it has changed our lives.
In December of 2017, the Cystic Fibrosis Fitness Institute (CFFI) hit the ground running and opened up the official home headquarters of the Cystic Fibrosis Fitness Institute in San Rafael, California. After 4 years of extensive research and hours and days spent observing and working closely with medical personnel at Stanford’s Cystic Fibrosis Clinic, one of the top CF clinics in the world, we gained the skill sets and confidence to bring this idea to life.
We believe that in order to put together the best exercise program, there needs to be evidence to back the exercises that are in the program. It then has to be integrated and reassessed over a course of time to determine if that fits an individual’s set of goals. Interestingly enough, our staff at Pulmonary Performance Institute (PPI) (formally known as CFFI), do not have cystic fibrosis. The staff at PPI is made up of exercise science specialists, exercise physiologists, pulmonary researchers, and strength and condition coaches. Each day, our staff dedicates their time connecting with the CF community through social media, podcasts, communicating with and working with individuals with CF. The staff at PPI knows that the best way to learn about how to support someone with CF is to speak directly to individuals with CF and learn about their daily living. While we do not have CF ourselves, our strongest tie to the CF community is our passion to help individuals with cystic fibrosis and learn the science behind pulmonary conditions to develop exercise programs to improve one’s quality of life. Each staff member at PPI has dedicated his/her life to researching, programming, and applying their findings to develop individualized fitness programs that help to improve the quality of life in individuals finding CF and other pulmonary conditions.
We have learned so much from working with athletes with CF. In only the past year, the CFFI division has designed individualized programs for over 100 athletes, which wouldn’t have been possible without support through donations, spreading of awareness of cystic fibrosis and CFFI on social media platforms and through word of mouth from family and friends.
Individuals with CF are the true fighters. The perseverance and strength of individuals with CF who continue to fight for their lives each day, are the individuals who inspired the spark that grew the Cystic Fibrosis Fitness Institute Division (CFFI) into the Pulmonary Performance Institute (PPI). Our foundation at PPI is built upon the strength and grit to beat CF, just as the individuals with CF do each day, continue to never back down and will win this battle.
Please visit https://pulmonary-performance.com/donate/ and @cffitnessinstitute to learn more about how you can donate and help support those with CF.
Any and all donations and support are greatly appreciated!
For more exercises content check out our YouTube Channel: Cystic Fibrosis Fitness Institute
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