Did you know that Octopus Overlords and GamingTrend have helped raised over $25,000 in the last 6 years to help find a cure for Cystic Fibrosis. OO\GG continues to make an impact to the CF community, and my family greatly appreciates all of your support, whether it's financially, emotionally, and both.
This year our fundraising event have grown which gave us the opportunity to host our event at Raley Field, home of the Sacramento River Cats, an AAA affiliate of the 2014 World Series Champ, the San Francisco Giants (sorry I had to get that in there for Lorini) It will take place on May 16th.
As you know, Ethan has Cystic Fibrosis, overall, he's healthy, but over the last few years he has developed some form of liver disease. Right now it's manageable through medications. This is his first year of school (preschool) and because he's exposed to more kids, he gets sick often, just like other kids. The part where it's different from most kids, is that his colds hit him harder, and it turns his 2 times a day treatments into 4, causing him to miss school. We calculated that he has missed over a month of school, and he only goes 3 times a week. He currently has a cold and a double ear infection that has kept him out of school for over 10 days. Today is his first day back even though he's not fully well. It's a preview to whats to come next year when he starts kindergarten. It's things that most parents don't have to think or worry about.
So that's where we are at this year, other than getting sick with colds or managing his liver disease, he's doing well, no major complications in relation to cystic fibrosis. But that can change anytime.
That is why I fundraise. Fundraising is extremely important to the Cystic Fibrosis Foundation, the money that we raise go towards research towards a cure, new medications and new therapies. Recently, many of the drugs that I've been talking about the last few years that were in trial are being released this year. The biggest drug Kalydeco with the combination of VX-661 will address Ethan's specific gene mutation, and attack the cause, not the symptom. This has been huge for the CF community. This drug actually corrects the cells and it has shown tremendous results. People having a hard time breathing and need oxygen masks, no longer needs it after a few weeks of taking it. Lung functionality has improved greatly because of it.
But it's not a cure, and that's our ultimate goal.
I tried to keep this short, and I have already failed. So I'll end here
Will you continue help support my son and 70,000 others worldwide? If you like to donate, you can visit my page herehttp://fightcf.cff.org/goto/KenDean
Also if you want to know more about CF and how it relates to us you can check out this year's video. It's a little dry. I was trying to go for a modern family style, but it didn't work.https://youtu.be/edUF4LguR6c
Thanks again for your continued support
Ken, Erin, Ethan and Lila