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Author Topic: Team Ethan Great Strides 2012--THANK YOU--  (Read 456 times)
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naednek
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« on: May 04, 2012, 04:15:33 PM »

Good morning!

May is Cystic Fibrosis Awareness month, and on May 19th, Team Ethan is again participating in the 2012 Great Strides Event.  What is Great Strides?  It's one of the biggest fundraisers the Cystic Fibrosis Foundation runs to raise money for new treatments and research towards a cure of this awful fatal disease.   Two years ago last month we found out that our son who was about 3 weeks old at the time, was diagnosed with Cystic Fibrosis.  Talk about a shock to the system!  Since then this will be our 3rd year participating in this event that directly helps over 70,000 people who have CF worldwide.  

What is Cystic Fibrosis?  Well, it's an inherited chronic disease that affects the lungs and digestive system.  A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.  

This year with the help of fundraisers like this, a new drug (VX-770) has been approved by the FDA that is showing great results.  This drug actually targets the defective protein (CFTR) which is the underlying cause of this disease.  This is great because all of the other treatments my son and others has focuses on the symptoms.  I read a story of a woman who lives in a 2 story house and she would have to do her laundry upstairs.  Prior to taking this drug she would have to catch her breath using an oxygen mask before continuing on.  Shortly after taking this new medication she noticed that she wasn't out of breath as often.  This new drug targets a specific CF mutation that isn't all that common.  My son carries the most common mutation and right now, they are working on finding away to help people who has this mutation.

Last year with the help of Octopus Overlords and GamingTrend, we raised $4,480.  Our team was in the top 5 in Sacramento, and to be honest, it was because of you.  Complete strangers took the time to care not only about my family but for people all over the world.  It still blows me away that people I have never met gave their hard earned money to a complete stranger (to be clear, it doesn't go to me, it goes to the Cystic Fibrosis Foundation).  It's an amazing feeling.

This year again, I'm asking for your help, our goal is $5,000 just like last year, we are currently sitting at $1,775.

The foundation receives no government funding and they have been rated one of the best organizations on being the most effective with their funding.

If you would like to donate, you can visit my site at
http://www.cff.org/Great_Strides/KenDean


Thank you,
Ken, Erin and Ethan
« Last Edit: May 24, 2012, 05:15:06 PM by naednek » Logged
kratz
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« Reply #1 on: May 05, 2012, 03:14:55 AM »

Cute kid, Ken.  It's awesome that there have been promising developments!
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EngineNo9
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« Reply #2 on: May 05, 2012, 05:45:54 AM »

Indeed, Ethan is still super cute and I'm happy to support your family again, Ken!

Not to be negative, but I anonymized my donation so that I don't get flooded with junkmail and calls to my cellphone from charities like I was during the last year.  If you happen to talk to anyone at the CFF, it might be worth noting that people don't appreciate their information being given out like that.  Instead of making me happy to support their foundation it makes me curse them every time I get one of those calls or pull more crap out of my mailbox.
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naednek
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« Reply #3 on: May 05, 2012, 02:44:57 PM »

Oh,  I did not know they do that frown  I know I get alot of emails from the but I thought was because I was a team leader.  Is there away you can unsubscribe?

I'd hate for this to turn people off to donating to an important cause, research has come far along and I'd hate for this to cause hesitation for people. 

I will send out an email to my chair leader and maybe she can pass that along.

They should make it an option if you wanted to be emailed with their info. 

My apologies for the inconvenience, I wish I had more control.
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kratz
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« Reply #4 on: May 05, 2012, 02:50:32 PM »

Bottom of the page:


"Would you like to receive occasional e-mail updates from us on medical and fundraising news?"
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naednek
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« Reply #5 on: May 05, 2012, 02:53:22 PM »

Ok, it looks like when you donate there's an option right at the bottom before you hit submit that you can choose not to receive communication other than your receipt.  Did you click on that?  
Hah should have refreshed this page. smile

Whew, I was about to send emails off to the the foundation. 

I definetely can understand your frustration, and I'm glad they give people an option.

Anyways, thank you both for your donations.  We just went over $2,000 last night!
« Last Edit: May 05, 2012, 02:55:43 PM by naednek » Logged
EngineNo9
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« Reply #6 on: May 05, 2012, 03:40:09 PM »

That checkbox is only for emails.  There is no option to opt out of them giving your mailing address and phone number away, and it is required to put in your full address regardless of payment method.  If I want to pay via Paypal and leave my personal information off entirely, that isn't an option.  They even do a city/state/zip verification to ensure that you didn't put in invalid information.

Obviously I can't be 100% positive it was this foundation that gave away my information to the charity mailing lists, but I almost positive it was the only one that I gave to last year that required that information.
« Last Edit: May 05, 2012, 03:43:02 PM by EngineNo9 » Logged

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kratz
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« Reply #7 on: May 06, 2012, 01:36:27 AM »

For what it's worth, I didn't get any mailings or phone calls last year after donating to this organization, Engine...
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naednek
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« Reply #8 on: May 07, 2012, 06:03:04 PM »

This will be my last bump to this thread, wanted to share this news!
http://www.cff.org/aboutCFFoundation/NewsEvents/2012NewsArchive/5-7-Phase-2-Kalydeco-VX-809-Interim-Data-Results.cfm

Quote
Vertex Pharmaceuticals Inc. today announced promising interim results from a Phase 2 clinical trial of its cystic fibrosis drug Kalydeco™ and VX-809, a CF drug in development.

The results showed a significant improvement in lung function in people with two copies of the most common CF mutation who received the two drugs in combination.

Both Kalydeco and VX-809 are designed to treat the underlying cause of CF. Complete results from the Phase 2 trial are expected this summer.

Today's news is why we fund raise. This would directly benefit Ethan since he carries this exact mutation. Without these types of fundraisers, this type of research wouldn't happen, and the results that you see below would have never occurred. The life expectancy would still be in the teens instead of the upper 30's and climbing.

For those who have donated, THANK YOU THANK YOU THANK YOU. For those who haven't, there's plenty of time to do so, any amount would be greatly accepted and used efficiently and responsibly.
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tiktokman
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« Reply #9 on: May 07, 2012, 06:23:04 PM »

Donezo!
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naednek
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« Reply #10 on: May 24, 2012, 05:14:50 PM »

I wanted to take the time and thank you for your donation to my son's Great Strides fundraising event.  Our team raised $3,765 (the video is already outdated) thanks to your generosity!  The walk was a little chaotic, but a huge sucess.  Last year they had 500+ walkers, this year, 1100+.  They are still tallying things up, but so far on just the walk alone, Sacramento raised over $150,000 to go to the Cystic Fibrosis Foundation.

There's a lot of good things going on in terms of new medications and research!  For the first time they are developing drugs that are targeting the problem rather than going after the symptom.  And it's all because of people like you. 

We know the economy is bad, and we don't take your donations lightly.  I'm forever grateful for everything you have done for us.

Below is a short video of the walk.
http://youtu.be/XTYh1ORsaxU?hd=1

Thanks again for your support!
Ken, Erin, and Ethan.
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