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What is NF?


Neurofibromatosis, pronounced Neuro-fi-bro-ma-to-sis (NF for short), is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births), even though not many people are familiar with it.


Gillian's Involvement

From Gillian's speech given on July 12, 2000 at an NF, Inc. Congressional Luncheon:

"Most of you know why I'm here, why I care. For those who don't know, the answer is my brother Aaron. In 1984, when I was a teen and he was three, Aaron was diagnosed with what was then called peripheral neurofibromatosis, now NF-1."



On May 3, 1996, Gillian Anderson visited Washington, D.C. and addressed members of Congress urging for more education and funding for NF research projects. She spoke at an NF, Inc. sponsored Luncheon and her remarks were entered into the Congressional Record by Senator Spencer Abraham from Michigan. Her remarks, and an introduction by Senator Spencer Abraham, can be found in the May 20, 1996 edition of the Congressional Record on pp. S5392-5394.

Click here to read Gillian's speech.



Excerpt from an interview with Gillian in Movieline Magazine, by Virginia Campbell, Dec. '98/Jan. '99:


Gillian: I've worked with various charities, some involving children, family violence, and multiple sclerosis. But there is one particular charity I work with the most-Neurofibromatosis.

Virginia: Why that one?

Gillian: My brother has the disease. I make appearances for that organization all the time. I even addressed Congress about the disease.

Virginia: What was addressing Congress like?

Gillian: It was challenging using my mind in that way and figuring out what was said. Neurofibromatosis is actually more prevalent than MS, but there are more stigmas attached to it because itís similar to the Elephant Man's disease, in those types of tumors, only they may not happen until the age of 30.

Virginia: Is the research progressing?

Gillian: Yes, and the research on NF has helped in a lot of other areas as well. What is amazing is that a lot of fans donate money to this cause for my birthday or Christmas or my daughter's birthday. It's incredibly generous of them.

Virginia: Well since the holidays are coming up, how can somebody who wants to give a donation go about doing that?

Gillian: There's a web site where you can do it. The address is www.nfinc.org.



How to Help

In an online chat (May 15, 2001), Gillian offered some simple suggestions on how to help:

"There's also an NF, Inc. website - www.nfinc.org. Donations can be made through that site. Or, you can do what other people do, which is organize some kind of fundraiser. You can bake cookies and sell them on the street corner and send the money in to NF, Inc.! :)"

Gillian's reply when asked, "Is it OK to use your name to try and raise funds in an NF event?" - "If it's simply saying, 'Please support the charity that Gillian supports,' then that's just fine. That's wonderful."

If you're planning to shop at Amazon.com, please use this link (or any other Amazon links throughout our site) so that the referral fees will benefit Neurofibromatosis, Inc.

Join iGive.com for your online shopping (400+ stores). NF, Inc. is listed as cause number 7859.

For lots of other ways to help, click here.

Thank you very much for your support!



 
Links & Resources

To learn more about Neurofibromatosis:

Neurofibromatosis Fact Sheet
Understanding NF1

Gillian is an Honorary Spokesperson of NF, Inc. (aka: The Neurofibromatosis Network).

Neurofibromatosis, Inc.

Just Ask Reggie Bibbs:

Visit his awesome web site!




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