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Doin’ It For Drew
Join us in fundraising to find a cure for Drew, and all those with cystic fibrosis!
We formed our team in 2010, just a few short weeks after Drew was born and diagnosed with cystic fibrosis (CF). With grandparents, great-grandparents, aunts, uncles, cousins, and friends spread from coast to coast, Drew has a large Ohana (family) in his corner. We are dedicated to not only adding tomorrow’s to his life, but adding quality to the those tomorrow’s, and ultimately a cure.
In October 2019, the latest "CFTR modulator" drug was approved by the FDA. Drew started taking it in March 2020, just as the pandemic was locking things down. It will slow the progression of the disease in his lungs. There have been 3 modulators that have come to market before this, but all these modulators target specific mutations. The latest targets a mutation that will reach about 90% of those with CF. We will not stop at 90%. We will not rest until we have a treatment for all those with CF. We will not stop until we have a cure for everyone with CF.
CF affects about 40,000 Americans. It’s a rare, genetic disease which has no cure. There are over 1800 mutations of the gene responsible for CF. Each person who has CF has 2 of these genes. The genes might have the same mutations, or different ones. In Drew’s case, he has 2 different mutations. One mutation is the most common one, and that is f508del. While the types of mutations are important as the drugs being developed target the different mutations, the mutations have little to do with the severity of the disease.
When Drew is “healthy” he takes enzyme pills before he eats, so that his body can absorb the nutrients in food. He also must spend upwards of 2 hours a day doing his breathing treatment. This involves wearing a vibrating vest while inhaling medication that helps to break up the mucus that builds in his lungs.
When he is sick, he will often have to do more breathing treatments, and be on antibiotics. Depending on the severity of any infections, the antibiotics could be administered by pill, inhaled, or intravenously. And while his parents try hard to do all treatments at home, a hospital stay is always possible.
In 1955 when the Cystic Fibrosis Foundation (CFF) was formed, children with the disease rarely lived long enough to attend school. Today, more than 50% of the CF population is 18 years or older! That means we have made tremendous progress in adding tomorrow’s to their lives.
But we have so much more to do! The drug pipeline is full of drug development that will not only treat the underlying cause of the disease, but help to treat infections. And we need to find a cure. Even with all these drugs, without a cure, those with CF spend hours a day doing treatments instead of living out their dreams.
Join us in finding a cure so that we can make CF stand for Cure Found!