Over the last 8 years we've seen new drugs being introduced with more in the pipeline. Drugs like Orkambi is a game changer for Ethan and his mutation. It's the first drug that actually goes after the cause, and not hide symptoms. Ethan started taking Orkambi almost a year ago. It was right after his 1st grade ended. We waited because we wanted to monitor him for any side effects.
When a person is diagnosed with CF they take a sweat test. I'm sure there's a technical term for it, but it's a test that they use to measure the amount of chloride (a component of salt) in the sweat. It's one of main indicators that shows if a person has CF. Here is a guideline that Dr's use.
To understand what the sweat test results mean, a chloride level of:
- Less than or equal to 29 mmol/L = CF is unlikely regardless of age
- Between 30 - 59 mmol/L = CF is possible
- Greater than or equal to 60 mmol/L = CF is likely to be diagnosed
The year before taking Orkambi he was sick with a cold all the time, and would miss 10-14 days of school because of it. This year, I think he's been sick twice. When he has been sick, he is not sick as long as he has been before Orkambi. That means, he's able to get the mucus out of his lungs much faster than he used. Which means, less chance of infections, which means less chances of being hospitalized.
Long story short, with drugs like Orkambi, Kalydeco, and the new Semdeko, people with CF are seeing the direct results of the CFF's mission to fund new drugs. The foundation was instrumental on getting this drugs through the pipeline.
So this is where you come in. While these are great things, we still have no cure. The CFF and Team Ethan won't stop until there is a cure. And unfortunately, that takes money. Money to fund research. The good news is CFF is one of the best medical organizations out there, that spends your donation wisely, and it has shown.
Our team goal is a lofty $10,000. We are very short of that goal, but that doesn't stop us from asking. Can you help my son and 70,000 people like him? It doesn't just help people in USA, but all over the world.
If you would like to make a donation, no matter how big or small, you can do so here...
http://fightcf.cff.org/goto/Ken
I didn't have the time to make a full fledged video like I normally do, but here is a teaser I worked on earlier in the year, highlighting out 8 years of participating in the walk.
Again, thank you very much for your continued support!
Ken & Erin
