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Amelia's angels Tshirts. Support Cystic Fibrosis foundation and get a cool shirt!!!

1K views 2 replies 1 participant last post by  2k2wranglerx 
#1 ·
https://www.booster.com/ameliasangels2014

my wife put these together. I think the design came out really cool. the T shirts are only 15 bucks. and who doesn't need another shirt right!?

we have to sell 20 for the order to go through!!!!

all proceeds go directly the the cystic fibrosis foundation.

I think a lot of people on here know. But my daughter Amelia has cystic Fibrosis.



Every year we do a bunch of fundraisers. I do an offroad jeep event, my wife does a local dinner at papa j's in Carnegie, we have a CF walk team, and we've started riding in the CF foundation's cycle for life event. Last year my team got a late start and we only had 3 people but we were still the number 2 team raising over 8,000 dollars.

For those that don't know. Cystic Fibrosis is a genetic disease that affects more than 30,000 people here in the US (and that number is growing). My non scientific explanation of it is that it's basically a salt disorder at a cellular level. And what happens is that salt issue leads to a sticky mucus forming in the lungs. That eventually leads to infections and scarring of the lungs.. and ultimately, that's what kills most people with CF. Average life expectancy is mid 30's but that's a HUGE improvement over what it was when people my age were diagnosed (i'm 33). Back then you were lucky to make it to high school! Anyway, in addition it also causes the tubes from the pancreas to clog so enzymes cannot make it to the stomach. As a result amelia takes 6 pills with every snack or meal. She also goes through 2 vest treatments a day (more when she's sick) and various meds through her nebulizer. Also 1 in 3 people with CF develop CF related diabetes. So she may eventually have that challenge as well.

the CF foundation has almost single handedly funded the research that has led to HUGE breakthroughs in ways to treat this disease. Kalydaco actually reverses CF in 4% of patients... while that may not sound like a lot, they're using this drug in addition to some new ones that are in trials and they're talking about a possible cure for 65% of people with CF by 2017!!!!! at our conference last night one of the Dr's related it to a marathon. we're at mile number 25 and we just need to push through that last 1.2 to the finish line. But that's also why funding is so critical right now.

and none of my posts is complete without pictures!!!!!

Here's a few of amelia.

attacking "waking up" Daddy:



ET?



most parents wouldn't encourage this... it's different for us :)



so dramatic:



eating licorice and doing her vest pt



being herself lol


more vest time


our walk team
 
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#3 ·
Thanks guys! we hit 54 shirts!!!!

had some sad news though. Just lost another teenager to CF. Her idol called and sang to her before she passed away. Wish i could shake Ed's hand.

http://www.irishmirror.ie/news/iris...ang-little-bird-3337456#.Uzr3Fya4CDE.facebook

i know it's in ireland. But the CF community is pretty tight knit. even across oceans. since they can't be around each other anyway, social media connects them.
 
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