Neurofibromatosis Support Group

We all should be on the same team. That makes no sense at all!

It makes me wonder about something. I had asked a few weeks ago what associations or foundations others here dealt with, just to see and know what's out there. If they (the organizations) act like these two, it may explain why no one spoke up besides me.

That's just plain sad!

I belong to the CTF Board and love it. I have never been on the NF INC page. I dont understand why they are fighting. We need more drs to treat NF, in Arizona we have ones for Kids but not for aduts. How sad is that

Yes, here in Columbus, the NF docs are associated with the children's dept. of OSU.

Ours in Pittsburgh are associated with our Children's Hospital.

But you don't have to be a child. They deal with adults as well.

In Arizona we dont have an NF clinic we have 1 main dr that treats kids with NF. After that you are on your own. I was never treated as a child for nf MY MOTHER did not take me to the dr @ all. It was not till I was 21 and pregant that I started going to the Dr. Then in 92, I was sent to asurgent because of headakes and she had an MRI done and 2 dAys later i had surgery but most drs dont have a clue what it is, or how to treat it. As for being an adult with NF they think NF goes away @ age 18. WhenI had surgery in July 07 the intern at the ER WAS JUST GOING to send me home and told me the parlized in my legs would go away in a few days. My friend mark said no it will not she needs to be seen by a dr. So I was put in the over flow room and had a CT scan done and was sent to Barrows and the dr there had a 8 dr team remove 11 tumors and debulk one. I am lucky to be alive.So I dont trust many drs and would love to find on in phx that knows something but nf

Wow.I am surprised.I have now joined the Nf marathon team here in Canada.I thought they were both working together???

As for Nf and adults it is hard to get children treated here:(

I heard about this! My best friend was diagnosed with NF, and she lives in NYC, so she's heard about CTF, and I live in Massachusetts, so I've heard about NF Inc. and I've been looking into the CTF/NF Inc. relations for a while.

I can't remember where I read it, but way back when CTF was still NNFF, that actually included NF Inc. Then at some point, the two groups split. Oh, here we go: http://www.ilnfinc.org/About.html. NF Inc. broke off because of a change in bylaws.

As far as I can figure, they're not really feuding. It's more like they concentrate on different areas. CTF really pushes the scientific/research aspect of things, and NF Inc. does more patient/family support. But I'm pretty sure CTF has family support, and NF Inc. contributes to research.

So it looks like they're two separate organizations heading towards the same goal, kind of like American Cancer Society's Making Strides Against Breast Cancer, and the Susan G. Komen Breast Cancer Foundation. Does that make sense?

That does make sense.

I'm taking a guess on my end, but I would suspect that our organization may be more along the lines of NF Inc than CTF, as they seem to be more involved in the support and treatment aspects than research.

I wonder if ours is affiliated with either organization. Might be something to look into down the road.

I have visited the BB for years, and people are not very nice at times there...People on the DS are sooo kind, sweet, caring.. But on the BB if you do not agree with someone, they verbally attack you....Countless people have said this...

Unfortunately, Mazel, I think that's just how things are in general.

I have a friend here who is involved with another grouping at DS that told me it's extremely clique-ish. If you aren't "in", your out, plain and simple.

That's just an unfortunate aspect of life all around. We are all each of us capable of great compassion, and evil intentions. It's just that most of us have learned over time that being nice helps people along much better.