Born in the amazing 1980s, and happy to see its return to popular culture once more, I decided one day in the year of 2017 that maybe I can do more to help out things I care about. But what could I do? I could run.
And then, I ran a marathon in 2017. Which, at that time, a lot of cool people gave over $2,200 to support me and my cause. Mission accomplished. ...
I was well-pleased for a duration. Satiated. Swearing I was done running like that.
Then... BEHOLD! A psychotic spirit! A... a... a sister! Who, with little to no cajoling, convinced me to maybe run again. This time beside her, with her. At that turn, my brain started ticking again... How could I help things out, again? How could I help things out in 2018?
Hi, my name is Zach and I am a Cystic Fibrosis (CF) patient - delta F508 homozygous if you are interested in my particular genetics, or just want a refresher from last time. I take the disease, and the politicking around healthcare, deadly serious.
So, what exactly is CF? Cystic Fibrosis is a genetic disease that results in chronic lung infections and diminishes patients' ability to breathe over time. Specifically, a defective gene (often hereditarily passed, but can spontaneously occur) causes deposits of thick and sticky mucus in the lungs, pancreas, and just about anywhere else where mucus occurs (lots of places, trust me). For the lungs, the mucus blocks the airways, traps organisms, and provides a fertile bed for bacteria and fungi to grow. These then create infections which typically result in extensive damage to the lungs, which ultimately results in respiratory failure. In the pancreas, the mucus blocks the release of digestive enzymes, causing malabsorption, or the inability of CF patients to breakdown and digest essential nutrients and calories. No fun at all. Oh, and to cap it all, average life expectancy in the United States for a Cystic Fibrosis patient is about 37 years. Yikes.
Now, many of the treatments and drugs that help CF patients are developed via the orphan drug system, where we, the "sickies," volunteer our bodies to science, being guinea pigs, and drug companies team up with the Cystic Fibrosis Foundation (CFF), who provides the funding, connections, and research teams, to create things to fight our disease. About six years ago, this epic teamwork paid off: we got a drug that actually treats the disease and not just the symptoms for the first time, ever. It is called Kalydeco. Then, we did it again with another drug, Orkambi. And now, we have another: Symdeko.
Winning!
Respectively, Kalydeco costs $300,000 a year, Orkambi costs about $260,000, and Symdeko costs $292,000 a year, without insurance or copay assistance. Chump change, am I right? However, the costs are indicative of how much research goes into developing these essential medications. And the CFF is the organization that shoulders the burden of funding these projects - both to the benefit of patients in the United States, but also throughout the world!
Background established, then, the story goes, a wild hair sprung up in my empty head while running like a mad man in the afternoon heat. I realized that I could help out others, be a good in society, by using my abilities. That was in Indiana.
That was in the Yankee north.
Move to the Deep South.
Now, sitting at home with a belly full of food and thinking how I could stand to be slightly less pudge, an email once again triggered that darned hair. I could run in a half-marathon, AGAIN! Specifically, this time the Sea Turtle Half Marathon on 16 February 2019 in Gulf Shores, Alabama.
Once more, I would *brilliantly* beg all my friends and family and their family and friends for money to donate to the CFF! You know, the people who develop these amazing drugs, sponsor the cutting-edge research, lobby for healthcare, educate the public, provide support to families, all that good stuff! You know, the CFF is totally amazing at being a charity! Don't believe me, check out their awesome rating on Charity Navigator (https://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=9142).
Long story short, support me, my sick lungs - both literally and the figurative sense, as I can and do run marathons, so they are very sick as like "sick car, man!" - by making a donation to this cause. Once again. After all, do you really think I was going to stop?
Do remember, though, ALL proceeds go to the CFF. I don't see a dime. You can even elect if you want to pay the transaction fee for the charity or not - if you feel miserly, scrooge. But hey, I get it, if you want that round number, totally understandable. Stay salty and cheers!
