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Cystic Fibrosis Foundation adding tomorrows through music

Rachel Ruggera, Staff Writer

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A group of seven Country Day musicians performed at the Breath of Life Gala for the Cystic Fibrosis Foundation, or the CFF in order to fund research and improve treatment and support for CF patients. San Diego hosts this gala every year to raise money and hold an auction for prospective donors to their foundation. Our LJCDS student-run club, Musicians with a Purpose, had the opportunity to play for this night and raise awareness about a disease that impacts over 70,000 people worldwide.

Cystic fibrosis is an incurable, genetic disease that affects the patient’s everyday life by limiting their ability to play sports, work a full-time job, and even eat meals regularly. This disease causes frequent lung infections, difficulty breathing, and can affect the liver and intestines as well. A child with CF begins experiencing symptoms soon after birth and is usually diagnosed by age two. In 1962, parents were told that a child with CF’s average life expectancy would be only 10 years old, but today it has grown to about 47 years and is expected only to increase.

With recent research in genetics and gene editing, scientists are extending a child with CF’s life expectancy and eventually could remove the faulty portion of DNA altogether. Advances in genetics have created technology and treatments once only seen in science fiction movies and your imagination. CRISPR-CAS9, the newest system capable of cutting and inserting new genes into DNA, has the potential to remove a genetic disease and stop it from harming thousands worldwide. While it will be many years before this treatment is used on humans and even more before society determines whether or not it is ethical, CF patients continue to fight this disease with the hope that it will become more easily treatable and maybe even curable.  

Today, the CF Foundation will “aggressively fund research until CF stands for cure found.” Near the end of the night at the gala, guest speaker Andrea Petray shared about her life with CF. She frequently runs for Great Strides, CFF’s fundraiser walk, and is currently healthy and thriving after many surgerys and years of antibiotic treatments. At 37, she has run four half-marathons and a marathon and works for a successful law firm. Tom Skeldon, a twelve year old boy with CF, uses music to battle his disease. He feels that by playing guitar and singing, he is able to improve his lung function and live his life to the fullest. Each person has his or her own story of coping with CF. It was a privilege to hear Andrea Petray speak and a great experience to play with Musicians with a Purpose at the gala.

 

Sources:

http://www.cflf.org/about-cf

https://cysticfibrosisnewstoday.com/2017/08/30/young-boy-uses-music-improve-health-cystic-fibrosis-2/

https://www.cff.org/CF-Community-Blog/Posts/2016/Navigating-the-Limits-of-CF/

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Cystic Fibrosis Foundation adding tomorrows through music