Acerca de la fibrosis quística
Cystic fibrosis (CF) is a progressive, fatal genetic disease that affects the lungs, digestive system, and other organs. CF causes thick, sticky mucus to build up in the lungs, which leads to life-threatening lung infections and ultimately, respiratory failure. There are approximately 30,000 people with CF in the United States and 70,000 worldwide.
In recent years, there have been transformative, new mutation-targeted therapies approved for 90% of the CF community. Unfortunately, those with “nonsense mutations,” like our co-founder Emily, are part of the unlucky 10% of the CF community that do not benefit from these life-changing drugs. They still contend with the same deadly disease that cystic fibrosis has always been — waiting with bated and fading breath for their breakthrough therapy.
“For Natalie’s mutation, there is no mutation-specific treatment at all. The new advancements in cystic fibrosis mean absolutely nothing for her. In a way, we are glad that she is only 7 years old and not old enough to be crushed by the agonizing fear and frustration of realizing that you have nothing available to make you better when so many others are cheering incredible progress.” – Arek Puzia, father of a child with CF
Emily’s Entourage (EE) believes that no matter how rare your disease or mutation, nobody should be left behind and every single person with CF deserves hope for a future and for a deep breath.
Interested in learning more? Check out our blog post on the top five things you (probably) don’t know about CF!
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