September 23, 2017
BENEFITING: Cystic Fibrosis Foundation
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.
Hi, my name is Zach and I am a Cystic Fibrosis (CF) patient - delta F508 homozygous if you are interested in my particular genetics. I had a brother, once, who had CF. He died, it sucked. So, I sort of take the disease very personally. So, giving to a cause I care about is even MORE personal.
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 five 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.
Respectively, Kalydeco costs $300,000 a year and Orkambi costs about $260,000, without insurance or copay assistance. But, hey, who cares about costs for one drug in our daily cocktail? We actually had something to give us a theoretical normal life expectancy instead of the paltry mid-30s, or when I was born the amazing longevity of a tween!
Thus, one day I decided, on a wild hair while running like a mad man in the afternoon, that I could help out by signing up for a half-marathon, namely the Mill Race Half Marathon this 23 September in Columbus, Indiana. Then, I would *brilliantly* beg all my friends and family and their family and friends for money to donate to the CFF! You know, the guys and gals who help develop these drugs, sponsor the research, lobby for healthcare, educate the public, provide support to families, all that good stuff! And, what's more, 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. Remember, 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!