Celebrities with NF

Just thought id start this discussion see if anybody knows or heard about a celeb with NF could be a good way for the general public to know and understand it better.

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Hi! I 've tried to find someone famous suffering from our genetic disorder.
Gillian Anderson's brother has NF1. Otherwise, i donno...If i get famous one day, don't you worry, I will do the best to be a good spokesman ^^

Thomas ^^

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oh thanks id have never have known. cheers thomas

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No but if a famous person had it or their child did, then NF would get much more attention.

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The brother of Gillian Anderson (X-Files) has NF.
http://www.gilliananderson.ws/charities/nf.shtml

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NF isnt as celebrity friendly or chic as breast cancer or aids. We dont have pink handled scisors or red cell phones to raise awareness of our issues. I was surprised to see the doodle auction. Mike Ness did one ( <3 ) and that rawks. There were actually alot of celebs involved, however I dont know how many actually had it or were just supporters. Sometimes, its not just about how much support a celeb is willing to give, its about how much play the media will give the issue.

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In one of the discussions someone mentioned nf awareness month. I don't know if it was this month or last month. In all of my 30 something years I never heard of nf awareness month. Where are the ribbons and why are'nt the cashiers asking if I would like to donate a dollar to the nf awareness fund so I could have a ribbon or some other picture posted on the wall?

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May is National Neurofibromatosis Awareness month and has been for a number of years. Unfortunately NFInc. and the Children's Tumor Foundation (formerly the National Neurofibromatosis Foundation) haven't done a good enough job promoting it.
Many state legislatures have passed proclamations making May NF Awareness month, but those proclamations are a dime a dozen.

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There is a celebrity who has NF it is a girl from the tv show Degrassi Next Generation..i forget her name but she does have it.I will find ot and post..since i did in another group I am in.

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After endless hours of searching...and browsing there is an actress who does have NF,she played in 9 episodes of Degrassi Next Generation, her name is Munya "Mony" Yassir.Kinda cool to know tht there is a celebrity out there with this condition.She is a canadian actress.

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You as an individual can always asks your local stores to put out awareness month stuff.

Neither CTF or NF, Inc. should be responsible to promote awareness at local levels... They can only do so much.

Whenever I hear of local government doing May is NF awareness month proclaimation, it's because a parent, or local chapter made it happen.

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I was Lucky enough to win a Doodle of Bob Oblong by Angus Oblong.
I'm trying to get Famous.lol

I've wondered if the growths on Lemmy Kilmeister of Motorhead left cheek were fibromas?
J."KNOTTY" Willman

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LUCKY !!!! I want a drawing by Him. I wonder that whenever i see Lemmy too.

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Here in California we have wasted countless hours (and tears) attempting to get a Governor's proclamation. It's helped to educate a few people in Sacramento, but hasn't produced the proclamation.

But, that hasn't stopped NF Inc from "celebrating" NF awareness month. We had a symposium in OC, social event near Concord, supported doodle day, and Jaxon and I were even on the news raising awareness in Fresno. It's been a busy month, especially considering that all of CA's NF Inc board members are volunteers. We still had doctor's appointments, jobs, finals, weddings, funerals, graduations, and families to juggle.

I cannot speak for ctf, but I know the board members of the various NF Inc organizations invest much of their energy in trying to raise awareness. The celebs who donate doodles do it to help us, not because they have NF. They helped because someone asked.

That's what we as an NF community need to learn to do better. We need to politely speak up. We need to ask. Ask our local news stations to do a story about NF, ask our social leaders to shine the spotlight on NF, and ask our political leaders to support NF research funding.

NF is not rare. Unless you live in a town with less than 3000 people, there are other NF patients living in your community. Why haven't we found each other? Because we are too quiet.

The pink ribbon example is perfect. Remember twenty years ago when breast cancer was not mentioned out loud? People would discreetly go through treatments, trying to hide their diagnosis. Now, it's a badge of honor - women boldly fight breast cancer and succeed with all their friends' support. Those who lose the battle lose with everyone knowing what enemy robbed them of their loved one. And those people then take that energy and fight harder to raise money and awareness in hopes of a permanent cure.

That's what NF needs. We need others rallying with us! NF is not as widespread as breast cancer but it can be as devastating. But, people don't know that because we haven't told them.

If any of this feels true, please contact someone who has the power to make a difference. Start locally if you want to see the fruit of your efforts. If national or global is your goal, join others around the globe who are trying too.

I don't mean to offend anyone by saying that we are not trying hard enough. Some of us are. But, we need help! If you want to change the world, join us!

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I got some pamphlets to put in drs office and places. No one knows what nf is and it is very frusterating. My son has it and you never hear of anyone talking about nf. I have mentioned nf to a couple of ppl i buy autism awareness things off of on ebay. She asked about it and I havent heard anything back from her yet. I got the pamphlets from Neurofibromatosis, Inc. All I did was emailed and asked for pamphlets and I got them within a few days. I was excited. I will get more when I run out, There are plenty of places to put them. The email address is www.nfinc.org.

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I hear ya it is true one voice aint loud enough. i Have never met anone with nf to who i can talk with about but would like to meet somone with nf too. Im in USA california in june - aug at a summer camp just off lake tahoe trying to push myself to lead a normal life. Would like to chat with people out there if the chance arises to understand nf better from different points of view.

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OK,
here's my theory. Gillian Anderson's brother gas NF and she does a great job. But a whole lot of people with NF try to hide the fact. The bumps and lumps make some of us uncomfortable or even ashamed. Will you wear short sleeves? Sure, people stare and sometimes make comments. Why would a celebrity with NF in the family be any different? I work ina retail store and some (just a very few) of our customers won't let me wait on them. I just move on to the next one. Sometimes someone will ask about the bumps and I explain a bit about NF. Guess what? Occasionally they will say a cousin or uncle has it too. My main point is how can we expect celebrities to ride in on white horses and take up the cause when so many of us are hiding from the world?? I know it can get nasty out there, and I really don't have all that many outward signs. Most of mine are inside which is kinda cool too. Years ago I started blaming my screwups at work ("I would have got that right but I have these darn tumors in my head.") on NF. The people I work with are great. They won't let me do the heavy lifting when theysee me trying, and on my real bad balance days they tell me to go sit down for a bit. My boss is the same. After my neck surgery last year he called me every day at home to see if I needed him to bring me anything in the way of food and stuff. If we in the NF world expect to be noticed we shouldn't oughta be ashamed and hiding. There's a bunch of us out here, NF1 affecting 1 in about 3000 and us NF2'ers with about 1 in 40-50,000.
Mark

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I am new to the site. Looking for comfot. Was getting it till I read the reply from spork. About NF is not chic like breast cancer. I have pink scisors and proud of it. There is NOTHING chic about breast cancer I am going to be 50 this year. I was born with NF. I come from a large family. I am the only with it. At the age of 36 I went through heck. I was dignoised with breast cancer. I am the only one in my family (so far) with cancer. People don't know what NF is we need to educate them. Sorry i vented like this but coments like that are as bad as people who don't know what nf
is making comments

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I agree with July. I, too, am the only one in my family with NF. I just turned 45. I also "buy pink". My best friend in the world died almost 10 years ago, the age of 34, from breast cancer. I had a breast cancer scare myself three years ago, and fortunately, the lump was benign, but I still get checked every six months.

And yes, NF does not get the media attention that breast cancer. aids, or many other diseases and disorders get. That is one of the reasons that NNFF changed their name to CTF, people feel more compassionate when they hear the word "children".

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It would be wonderful if NF has a 'go to' person like Michael J. Fox. However we don't so we do the best we can to be our own PR machines.

Many folks have lobbied and sent volumes of information to Oprah. However she has ignored us completely. Imagine what one show during the month of May could do for NF. There are several folks I know from this site as well as CTF who said they would go on the show to help educate others.

Mark, I agree with you. Me, I cover up but not Jay. I do not possess the courage that is innately (Sp) his.

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Buying pink is a great thing! We own a lot of pink around here. And, purple for Relay for Life. I think what was meant was that since celebrities support both the pink campaign and the red campaigns "being aware" is a popular crusade - and gratefully so! We all benefit from the world's desire to become more aware.

During Jaxon's second year of chemo, I was sent in for a mamogram and detailed ultrasound because of something my doctor found. Although I know that my time will probably come in the future, I prayed to get through Jaxon's chemo experience first. Cancer statistics are terrifying. I have two sisters. Statistically speaking, one of us will be diagnosed with breast cancer during our lifetime. I am grateful that wearing pink is popular. That crusade saves lives.

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