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Author Topic: [2015] Team Ethan Great Strides Thank You!  (Read 373 times)
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naednek
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« on: May 01, 2015, 03:26:07 PM »

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 here
http://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
« Last Edit: May 17, 2015, 02:21:43 PM by naednek » Logged
farley2k
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« Reply #1 on: May 01, 2015, 04:55:39 PM »

Quote from: naednek on May 01, 2015, 03:26:07 PM

I tried to keep this short, and I have already failed.  So I'll end here

Don't try.  The more real stories people here the better.  It is wonderful to actually know about daily life of people with CF, and new drugs, etc. which most people don't talk about. I really appreciated it.

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rittchard
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« Reply #2 on: May 01, 2015, 06:14:57 PM »

Best of luck again to Team Ethan!!!


P.S.  Don't forget to check if your company does donation matching.  I totally forgot about it but it looks like mine does so I just sent in the request.  Hopefully it gets processed faster than other stuff does around here  icon_smile
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naednek
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« Reply #3 on: May 01, 2015, 09:20:01 PM »

Quote from: rittchard on May 01, 2015, 06:14:57 PM

Best of luck again to Team Ethan!!!


P.S.  Don't forget to check if your company does donation matching.  I totally forgot about it but it looks like mine does so I just sent in the request.  Hopefully it gets processed faster than other stuff does around here  icon_smile

I work for the State, you know tax dollars...  never will happen, but hey we'll give free money to people Tongue

Thanks Richard!

We just went over $5,000.  Our goal is $8,000.  We were very close last year to reach $8,000.  Hoping to hit it this year.  The cool thing, right now we are #1 in money raised in Sacramento, and #1 with the most registered walkers.  Not that it's a competition, but I like seeing our name at the top smile
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naednek
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« Reply #4 on: May 12, 2015, 03:41:01 PM »

My only bump.

Our walk is 4 days away and we are so close to our team goal.  Last year we were around $300 short from our $8,000 goal, and it was my hope that with the addition of new team members that we would surpass it this year.  Right now we are $875 away from hitting our goal.

Today is a very important day for the CF community.  Today is the day that the FDA advisory committee will meet to evaluate the safety and effectiveness of the ivacaftor/lumacaftor combination drug (Orkambi) and provide a recommendation to the FDA for or against approval.  This is the miracle drug that I've been talking about the last 5 years.  This is the drug that will directly help Ethan, it's the drug that corrects the damaged cell.  It's the first drug that isn't fixing the symptom, but the cell itself.  The CF community feels that we are close to a cure, and this drug is the first step.  Ethan is 5, so if today's advisement goes through, he won't be able to take it until 12, but it's a start and it's going to help thousands.  This drug is for the people who have most common mutation of CF.  So it's huge news.

This is why I fundraise, this is why I ask for your help each year, because the foundation doesn't receive government funding and relies on fundraising and investing to make things happen.  Can you help?  

http://fightcf.cff.org/goto/KenDean


Thank you!
Ken, Erin, Ethan, & Lila
« Last Edit: May 12, 2015, 04:19:27 PM by naednek » Logged
rittchard
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« Reply #5 on: May 12, 2015, 04:38:33 PM »

Looks like my company will match my donation, but from the note I got it may not reach the foundation until the end of the month so it may not get counted.  I guess they lump all donations together or something like that.

Best of luck!
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naednek
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« Reply #6 on: May 12, 2015, 04:44:51 PM »

Quote from: rittchard on May 12, 2015, 04:38:33 PM

Looks like my company will match my donation, but from the note I got it may not reach the foundation until the end of the month so it may not get counted.  I guess they lump all donations together or something like that.

Best of luck!

awesome Thank you!  While this is for the walk, we still fundraise all year.  I tend to stop in May.  You can only ask so much smile  I spam Facebook way more. 
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farley2k
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« Reply #7 on: May 12, 2015, 08:44:11 PM »

I hope you don't mind but I posted about this on Gamers With Jobs - another forum I haunt.

http://www.gamerswithjobs.com/node/120297

If you are uncomfortable with this personal of stuff being spread around I will remove the post but I want you to reach your goal!
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naednek
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« Reply #8 on: May 12, 2015, 10:34:02 PM »

thank you Farley!  Don't mind at all. 
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naednek
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« Reply #9 on: May 13, 2015, 08:45:50 PM »

This is not meant to bump, but wanted to thank everyone who had donated.  Today we have reached our goal of $8,000 with the help of OO, GT, friends and families.  This was our biggest year of our 6 years of fundraising.  Team Ethan has now raised over $33,000 in that time period.  That's simply amazing.

Thanks again for all of your support.

We are currently #1 in Sacramento, and one of the perks is having a MVP seating area (shade, drinks served to our team members) and the 2nd place team is quickly gaining on us.  There's 3 days left and we're hoping we can hang onto our lead.  So even though we reach our goal, it doesn't mean we stop fundraising!  So if you would like to donate, and help us secure 1st place, you can do so by clicking here

http://fightcf.cff.org/goto/KenDean
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farley2k
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« Reply #10 on: May 13, 2015, 09:03:58 PM »

Yahoo.  icon_smile
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kratz
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« Reply #11 on: May 13, 2015, 09:44:40 PM »

Glad to see that they are making some progress on treatments!
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naednek
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« Reply #12 on: May 13, 2015, 10:19:39 PM »

Quote from: kratz on May 13, 2015, 09:44:40 PM

Glad to see that they are making some progress on treatments!

Yes!  Yesterday was important, the committee recommended to approve the very drug that will help Ethan, who has the most common CF mutation.  It's huge news, prior to this, they had medication that helped the least common.  That's still good to have, but now this drug will help thousands more.

Now we just have to wait till either Ethan becomes 12, or that they lower the eligibility requirements.  And hope that insurance will cover it.
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naednek
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« Reply #13 on: May 17, 2015, 02:26:01 PM »

Thanks all for your donations!  Yesterday was great, while I didn't get to experience due to being in charge designing and setting up the route around Sacramento, I heard it was a great time.  My feet are killing me, I believe I walked about 10 miles yesterday placing signs along the 4 mile route, walking the route, and then picking up the signs afterwards.

Team Ethan exceeded our goal of $8,000, and raised $9,610.  Thank you again for your support.  Our Sacramento goal was $193,500, and we exceeded that and had raised over $220,000 and counting.

We truly appreciate your generosity and thanks for once again supporting us!
Thank you,
Ken, Erin, Ethan, & Lila

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