Research

Research has brought the CF community new ways to treat Cystic Fibrosis, thus, extending the median survival age from just a couple of years when CF was first discovered in 1989, to the late thirties, currently. Medications such as ®Pulmozyme, ®Tobi, ®Cayston, and hypertonic saline, as well as many new antibiotics to treat resistant strains of bacteria, have helped CF patients to get the thick mucous out more efficiently and fight virulent infections. Scientists developed the CF mouse, and though the mice don't exactly mimic the human version of the disease, scientist have used that technology over many years for developing new medications and treatment options.

The newest research buzz in the CF community has been the exciting results in clinical trials of ®Kalydeco (Ivafactor). It is a CFTR potentiator, meaning it helps to fix the basic defect of Cystic Fibrosis by temporarily activating the CFTR. It is a tablet that must be taken daily, so it isn't a permanent solution. However, results of clinical trials have been promising, with patients having significantly improved lung function. ®Kalydeco is only effective for people with a certain mutation named G551D. ®Kalydeco is currently being tested in combination with another medication called VX-809 for people with two copies of the Delta F508 mutation. Since this happens to be the mutation that our daughter has, this is encouraging and exciting news for our family.

The CF Foundation is working hard "Adding Tomorrows!"

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