Cystic Fibrosis - @katiescrusaderscf

“My name is Katie Aryeh and I am 16 years old. My wonderful and extraordinary mother, Ann, passed away from Cystic Fibrosis in 2009, 3 hours after my 7th birthday. Cystic Fibrosis is the most prevalent genetic disease in the world, and there is no cure. While there have been drugs that can greatly improve the lives of patients, they only work for about 50% of the population. I have continued to run a CF Great Strides team in my mom’s honor which we started together when I was 5. For as long as I’ve been able to, I have attended the Cystic Fibrosis Foundation’s annual Teen Advocacy day, flying to Washington D.C. to meet with our country’s congress members to push for funding and support. Like my mom, my Uncle Tom also suffers from CF. While he’s thankfully doing pretty well, more research is needed to ensure that he has a more normal life span, so that his 13 year old daughter won’t also have to lose a parent prematurely. My mom fought long and hard to stay with me as long as she could; even though her ability to do so was taken from her, I will never stop fighting until I find a cure in her honor.” @katiescrusaderscf

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