Cystic Fibrosis
Cystic Fibrosis
I was born with Cystic Fibrosis (CF) and fundraise because better therapies mean less time in the hospital for me and ~80,000 other people with the disease.
What Is Cystic Fibrosis?
Cystic fibrosis (CF) is a genetic disease where a faulty gene (CFTR) prevents proper protein production and improper function in the chloride channels of the cell. This is shown in the diagram to the right. This causes natural mucus in the body to thicken, eventually clogging the lungs and digestive system. Chronic coughing and food digestion difficulties are common traits that characterize cystic fibrosis.
Research spurred by the Cystic Fibrosis Foundation has led to the creation and approval of modulator drugs that has increased the median lifespan from 37 years to 53 years. This lifespan increase has happened because of medicine research funded by donations that produced medicines that were first approved between 2012 and 2020.
I Fundraise because it corresponds directly to results
More than half of my daily treatments resulted from research funded by the Cystic Fibrosis Foundation (CFF). The box in my hand to the left is Orkambi - the first medication I could take that changed the underlying way my body works (in 2016). These medications helped me gain back 13% of my lung function and have erased the smoker’s cough I had throughout my childhood.
Without significant government funding for CF research, organized charities are one of the few ways that significant medical progress has been made.
If you want to geek out about the economics or the science behind the new medications coming out from Vertex (funded by the CF Foundation’s investing), click the hyperlinks above!
MY CHallenge to You
I ask that you fight CF with me by either volunteering at a local event or simply giving a day’s worth of your salary each year to the CF Foundation’s Annual Fund. Research funding currently focuses on gene therapies that could enable cells to function correctly, preventing the symptoms of the disease from occurring.
I hosted a cars & coffee fundraiser that featured a scavenger hunt in Los Gatos, CA last year. If you’re interested in coming out to the 2024 iteration of the event, email me so I know to keep you in the loop!
