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NF: Running for a Cure

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son_of_a_gunn_25
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NF: Running for a Cure#1
Posted: 1/26/08 at 1:17am
NF (Neurofibromatosis) has been on my mind a lot the past few weeks because the little girl I run in honor of is back on chemo and struggling a bit, so I felt giving a bit more exposure to a good cause was due. Here is a new PSA that the organization I run for has put out.

http://www.ctf.org/swf/CTF1_w_Captions_For_Web.html

If you have any questions feel free to ask.

The Children's Tumor Foundation
My avatar is a reminder to myself. I need lots of reminders...
Updated On: 3/17/08 at 01:17 AM
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miss pennywise
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re: NF#2
Posted: 1/26/08 at 1:28am
I'm sorry to hear this, Gunny. Will you be running again in 2008? Make sure you let us know how we can support your efforts.
"Be on your guard! Jerks on the loose!"

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**********

"If any relationship involves a flow chart, get out of it...FAST!"

~ Best12Bars
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son_of_a_gunn_25
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re: NF#2
Posted: 1/26/08 at 1:41am
Yeah I will be. I haven't had the money to spare yet to register, but once I do I'll get my fundraising page up and share the link.
My avatar is a reminder to myself. I need lots of reminders...
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tazber
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re: NF#3
Posted: 1/26/08 at 1:49am
you're awesome son. Please keep us posted.

I'm sending some of my magic tazberations to the little girl.
....but the world goes 'round
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sesot
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re: NF#4
Posted: 1/26/08 at 3:21am
Gunn that is great what you are doing. I have treated a few kids with this. They can be in a lot of pain. Research is so important! Keep us posted on your future fundraising efforts
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son_of_a_gunn_25
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re: NF#5
Posted: 2/10/08 at 6:03pm
Just updating everyone that my fundraising page is up. Someone kindly donated the registration fee for the marathon so I am officially starting to collect donations. I'm aiming for $2500 this year. PM me if you still want to donate, but would rather mail it in.

*Update on the little girl I run in honor of. She is off the chemo drugs that she had a severe allergic reaction to and is going to go on a pill form. It means less time in the hospital so her parents are thrilled.*



Donation Page
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Updated On: 4/26/08 at 06:03 PM
wexy
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joined:9/19/05
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re: NF#6
Posted: 2/10/08 at 8:31pm
My niece is being followed by the NIH in Bethesda for NF,
Just sent you something. Good luck and thanks.
'Take me out tonight where's there's music and there's people and they're young and alive.'
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son_of_a_gunn_25
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re: NF#7
Posted: 2/10/08 at 8:45pm
Thanks Wexy. There has been some promising research released in the past few days that might interest you.

http://www.sciencedaily.com/releases/2008/02/080207171125.htm

http://www.sciencedaily.com/releases/2008/02/080204143153.htm


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son_of_a_gunn_25
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re: NF#8
Posted: 2/14/08 at 12:04am
Just a quick bump.

My avatar is a reminder to myself. I need lots of reminders...
Updated On: 4/26/08 at 12:04 AM
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miss pennywise
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re: NF#9
Posted: 2/14/08 at 12:17am
Just made my annual donation, Joe. re: NF
"Be on your guard! Jerks on the loose!"

http://www.roches.com/television/ss83kod.html

**********

"If any relationship involves a flow chart, get out of it...FAST!"

~ Best12Bars
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son_of_a_gunn_25
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re: NF#10
Posted: 2/14/08 at 11:14am
Thanks Miss P!
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son_of_a_gunn_25
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re: NF#11
Posted: 2/28/08 at 12:52am
Discovery of the week for me was the medical podcasts on the CTF website. If you know any General Practitioners, please consider sending this link to them. GPs often have a limited understanding of the disorder and it is really important for them to better understand it to provide better support for their patients.

https://www.ctf.org/for-scientists/medical-podcasts/

The podcasts are from the leading experts on NF in the country, but are pretty accessible to the average person too if you are interested in more detailed information.

My avatar is a reminder to myself. I need lots of reminders...
Updated On: 3/6/08 at 12:52 AM
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re: NF#12
Posted: 2/28/08 at 2:20am
Bump.

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Updated On: 4/26/08 at 02:20 AM
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re: NF#13
Posted: 3/5/08 at 4:32pm
Bump


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Updated On: 3/6/08 at 04:32 PM
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re: NF#14
Posted: 3/6/08 at 11:40pm
re: NF

Last bump for the next two weeks. Just wanted to share a logo I made. The little girl I run in honor of loves skittles.

My avatar is a reminder to myself. I need lots of reminders...
Updated On: 3/6/08 at 11:40 PM
DG
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re: NF#15
Posted: 4/26/08 at 8:34pm
Any news?
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re: NF#16
Posted: 4/26/08 at 8:48pm
I'm at a little less than $700 raised. I am tapering my runs and recovering decently from a mild injury from my last long run. NF Awareness Month starts in May so I was going to bump this thread then... The little girl I run in honor of has found a way around learning pill swallowing so she will be able to take a less intensive chemo drug which is good news.

I'll also definitely (barring further injury) be doing a half marathon two weeks later at Cleveland.

Thanks for checking!
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sabrelady
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re: NF#17
Posted: 4/27/08 at 10:55am
Just donated my mite. Hope it helps- Good Luck & G*d Bless!
Words that confuse censors:Fecund,penal,taint, titmouse, cockatoo,coccyx, ballcock, cockeye, prickly,kumquat, titter,cunning linguist, insertion, gobble, guzzle, swallow, manhole, rimshot,ramrod,come, fallacious, lugubrious,rectify,Uranus, angina, paradiddle,spotted dick,dictum, frock,cunctation, engorge,turgid,stiff, bush, uvula, crapulence, masticate, Dick Butkus, gherkin and of course the always bewildering lickety split. As you can see, context is every thing. Chuck Lorre Addendum: 555 382 5968 "Sexarama, Hexarama, Queeriosis, Feariosis!" Alec Baldwin Im going to have to science the shit outta this. The Martian
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re: NF#18
Posted: 5/5/08 at 1:57pm
re: NF

So I ran the race yesterday, but made the hard decision to downgrade to a half marathon rather than the full. I am recovering from a knee injury that didn't allow me to finish my training as well as I should have.

I took it pretty easy and finished in just under 2:30 based on the race clock. (About 45 seconds before the full marathon winner crossed the finish.)

I also found out the team is doing the Antartica Marathon in 2010! I have a definite interest in that one! Thanks to everyone who supported!

(Not a great picture, but here is a sign the little girl I run in honor of made for me. It will definitely be staying up on my wall.

My avatar is a reminder to myself. I need lots of reminders...
Updated On: 5/5/08 at 01:57 PM
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sabrelady
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re: NF#19
Posted: 5/5/08 at 2:11pm
Congrats Joe! The point is to participate and raise funds not to go on until you injure hourself, so good on you for knowing when to pull back. And congrats!( ANTARCTICA!!!)
Words that confuse censors:Fecund,penal,taint, titmouse, cockatoo,coccyx, ballcock, cockeye, prickly,kumquat, titter,cunning linguist, insertion, gobble, guzzle, swallow, manhole, rimshot,ramrod,come, fallacious, lugubrious,rectify,Uranus, angina, paradiddle,spotted dick,dictum, frock,cunctation, engorge,turgid,stiff, bush, uvula, crapulence, masticate, Dick Butkus, gherkin and of course the always bewildering lickety split. As you can see, context is every thing. Chuck Lorre Addendum: 555 382 5968 "Sexarama, Hexarama, Queeriosis, Feariosis!" Alec Baldwin Im going to have to science the shit outta this. The Martian
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xxnewgirlxx
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re: NF#20
Posted: 5/5/08 at 2:29pm
My nephew suffers from NF, although luckily, a very mild case. He's 12 now and is only just starting to form tumors in his neck. He's had the cafe au lait spots since he was a toddler. As of now, they are not causing him any pain or hindering his health.

Sadly, it's very much a "wait and see" kind of disorder. Luckily, he's old enough that the chance of him developing tumors on his optical nerves has decreased dramatically.

He's a little small for his age, and has had some developmental issues in school, but for the most part, is a healthy boy.

The NF chapter here holds a walk every year and this year it's June 7.