"Thank you. I am just listening to the very small list of my accomplishments. They seem so insignificant in the presence of such gurus as Dr. Collins and Senator Kassebaum. I'm very honored to be here. But I will say, this is much scarier than any X-File I've encountered. I'm going to read what I have written. I may be able to look you in the eye, but at this point it's written down and hopefully I can make some sense.

My first lesson with neurofibromatosis came when I was 16, after we learned that my three and a half year old brother Aaron had it. My mother took me to the first meeting of what was to become the Neurofibromatosis Support Group of West Michigan. I remember the social worker there talking to the 40 or so people who had shown up. There were many who were too intimidated to speak, and there were many who were so excited about the prospect of communicating with people who for the first time understood what they had been going through, and also communicating the fears that they had experienced in their lives, that they couldn't stop talking. I remember in particular one young mother who had just lost her 6 year old daughter to an NF related brain tumor, and I remember a 60 year old woman who was trying somewhat heroically not to hide the many disfiguring tumors on her face. It was a very broad spectrum.

My mother tells me that some people never actually came back to that support group. I think for the many who remained over the past 11 and some years, that the support group has been there, they have shared in the comfort of unbiased friends and fellow sufferers, and in the slow but gradual understanding of NF and its unpredictable complications.

I have watched my brother grow into a sturdy 15 year old boy. We are among the most fortunate of NF families. My brother is mildly affected by it; so far so good. But as we learned here today, if we didn't already know, with NF, it is never over. He has a couple of visible tumors, skin tumors, right now. He may have no more; he may have so many more that they are uncountable. We don't know at this point. And then there's always the threat of the more serious tumors which can come about at any time. And I guess my one hope, regardless of what happens in the future for him, is that the "Joke-meister," as we call him, maintains his wonderful sense of humor throughout.

But it is not just Aaron and the West Michigan NF community. NF is worldwide, and it can happen in any family. And I must say that if the horror of this disease isn't enough to promote its financial support, something that has-- that is just as important, and something you might want to consider as an added bonus, is that the study of NF and neurofibromatosis research is already providing breakthroughs in understanding more about cancer. And we all know how to pronounce that.

I want to thank you for having me here, for joining me in an effort to raise awareness of a disease that is in dire need of acknowledgment, community education, and extensive research if we are going to find a cure.

Thank you very much."

Quoted material from the May 20, 1996. Congressional Record pp, S5392-5394.
Remarks of Gillian Anderson at Neurofibromatosis, Inc.
Luncheon, Friday, May 3, 1996.