NF: Running for a Cure

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NF: Running for a Cure

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

re: NF

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!"

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

**********

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

~ Best12Bars

re: NF

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...

re: NF

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

re: NF

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

re: NF

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

My avatar is a reminder to myself. I need lots of reminders...

Updated On: 4/26/08 at 06:03 PM

re: NF

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.'

re: NF

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

My avatar is a reminder to myself. I need lots of reminders...

re: NF

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

#10

re: NF

Posted: 2/14/08 at 12:17am

Just made my annual donation, Joe.

"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

#11

re: NF

Posted: 2/14/08 at 11:14am

Thanks Miss P!

My avatar is a reminder to myself. I need lots of reminders...

#12

re: NF

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

#13

re: NF

Posted: 2/28/08 at 2:20am

Bump.

My avatar is a reminder to myself. I need lots of reminders...

Updated On: 4/26/08 at 02:20 AM

#14

re: NF

Posted: 3/5/08 at 4:32pm

Bump

My avatar is a reminder to myself. I need lots of reminders...

Updated On: 3/6/08 at 04:32 PM

#15

re: NF

Posted: 3/6/08 at 11:40pm

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

#16

re: NF

Posted: 4/26/08 at 8:34pm

Any news?

#17

re: NF

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!

My avatar is a reminder to myself. I need lots of reminders...

#18

re: NF

Posted: 4/27/08 at 10:55am

Just donated my mite. Hope it helps- Good Luck & G*d Bless!

#19

re: NF

Posted: 5/5/08 at 1:57pm

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

#20

re: NF

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!!!)

#21

re: NF

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.

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