Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Okay, so at the marathon yesterday, I met a woman who saw my NF Team shirt and wanted to thank me. I asked if she was on the team even though she was wearing a different shirt. She said no, because that was CTF (Children's Tumor Foundation) and she was on her local NF INC. board. Apprently, they are not working together and in fact are feuding. Have you ever heard anything so stupid? Shouldn't we all be on the same "team"? She made the comment that she has tried to talk to people from NF INC, but to no avail. She said, "look at leukemia and lymphona, you don't see them fighting". lol. Anyway, I don't get it. Just wondered if anyone else had heard anything about this.
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!
But you don't have to be a child. They deal with adults as well.
As for Nf and adults it is hard to get children treated here:(
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?
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 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.
p.s. you guys are great, I love DS!
I guess I will throw my .02 cents in. I belong to both boards and go by the initials MJA or MJA2. Yes, the CTF board can have extremely heated discussion but they tend to be more when it comes to politics.
The most recent heated discussion came about because of the term 'freak' and the freak show that is touring the country. 999 eyes - google it.
NF Inc has a good board but hardly anyone posts. It could be several days before an answer is given to a question. This can happen at ctf but it has more people responding to newcomers question.
I am involved with the CTF marathon team as a volunteer and do not run.