Just wanting to let the NF community know that I'm heading to Portland and going to do the Portland Marathon as part of the NF team. Should be a great time...it's been fun to spread the word and raise some NF awareness among my friends and family.

ciao and see you on the other side...

x-posted to nfsupport

has anyone ever tried acupuncture for tumors? more for shrinkage than for the pain-aspect.

i have 1 or more on my spinal cord and am trying to avoid surgery at all costs.

Children's Tumor Foundation ( Read more... )

I'm Kerry, and I'm 21. I live in Australia, and I have NF1 ( Read more... )

anyone know about neurofibromas in the neck?

i went to the neurologist and after making me do all the little reflex exercize things, is referring me to an mri to check on that.

i asked the doctor what that might mean and all he said (so far) is that we'll "have to watch it".

Hello all ( Read more... )

Hi all, I'm Amanda, 24 (or will be in a week). I've had NF since I was about well... probably since I was born, but I was diagnosed when I was aobut 3 months (I think that's what my mom said, my 3-month check-up). I went through several CT scans as an infant/todler, no real reccolection of that. The thing I remember most was seeing my neurologoist ( Read more... )

I wanted to say hello. I have been diagnosed with it since I was very young. It never really inhibited my growth or learning, but always made me aware of my body and what it looked like. I have many of the purplish tumors ( Read more... )

I thought it would be nice to have extra members here by adverting the 2 live journal nf communities on the Bulliten Board at nf.org, I gave the link, and also told them my user name (without a link). Someone complained when they looked at my lj that they did not like what they saw on my friends only page and now it has turned into a row/heated ( Read more... )

I'm running in a 12k race in May with a friend, and she had this crazy idea about running in the Portland Marathon in October (go figure, we graduated high school together, and I was the cross country runner). Anyway, the thought just hit me about the NF Marathon team. It seems to be a good way to raise money and awareness for NF. I've looked on ( Read more... )