The following is a brief description of the disease Neurofibromatosis; this disease does have significant meaning in Gillian Anderson's life, or it would not be on this page. I encourage everyone to vist the NFInc web-site to learn more about this disease and how you might be able to help.


Gillian Anderson Speaks in
Washington DC
[ Speech / What is NF / NF Inc ]

On May 3, 1996, Ms. Gillian Anderson, star of Fox Television's "The X-Files," visited Washington, D.C. and addressed members of Congress urging for more education and funding for NF research projects. Ms. Anderson spoke at an NF, Inc. sponsored Luncheon and her remarks were entered into the Congressional Record by Senator Spencer Abraham from Michigan. Ms. Anderson's 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.


NEUROFIBROMATOSIS, INC.,
THE NF SUPPORT GROUP OF WEST MICHIGAN, AND ROSEMARY AND GILLIAN ANDERSON

Mr. ABRAHAM. Mr. President, on Friday, May 3, 1996, I had the honor and pleasure of hosting a luncheon here in the U.S. Senate on behalf of furthering awareness and understanding of the neurological disorder Neurofibromatosis. The luncheon, held in the Russell Caucus Room, was sponsored by Neurofibromatosis, Inc., a national nonprofit organization with chapters around the country which provides support for individuals and families affected by NF. NF Inc., also promotes greater education and awareness of NF and helps spur further research into its causes and treatment.

Neurofibromatosis is one of the most common genetic conditions of the nervous system. NF can strike any family and there is no known cure. NF is a progressive disorder that causes tumors to form on nerves throughout the body. It manifests itself in two genetically distinct forms, the most common of which strikes approximately 1 in 4,000 individuals. Although unpredictable, NF can cause hearing loss, vision impairment, seizures, bone deformities, learning disabilities, and cancer. Congress has consistently supported aggressive research into NF and has encouraged the National Institutes of Health to coordinate their activities in order to intensify research into NF's link to learning disabilities and its connection to other serious tumor diseases, including cancer.

In addition to providing Members and their staff with the opportunity to learn more about NF, the luncheon gave the organization's membership an opportunity to present awards to several individuals who have made outstanding contributions to the cause of finding a cure for and effective treatment of NF.

Our colleague Senator NANCY KASSEBAUM was recognized for her work on behalf of NF and other genetic conditions as a member --and now as chairman -- of the Senate Labor and Human Resources Committee. Dr. Francis S. Collins, Director of the National Institutes of Health's National Center for Human Genome Research, also received an award for his work in this area. Much of what is now known about the link between NF and human genetics is the result of research conducted by Dr. Collins while he was a professor and researcher at the University of Michigan at Ann Arbor from 1984 until his selection in 1993 to head the human genome project. And Dr. Martha Bridge Denckla, director of the developmental cognitive neurology division of the Kennedy-Krieger Institute in Baltimore, was named the 1996 NF, Inc., scholar, recognition for the significant contribution she has made to the understanding of NF and learning disabilities.

However, the highlight of the event for me was meeting and talking to two other individuals who played a prominent roles in the luncheon's program and who happen to hail from my State of Michigan.

The first person, Mrs. Rosemary Anderson, has a long record of activism on behalf of individuals with NF and their families. Rosemary Anderson currently resides in Grand Rapids and is co-president of the NF Support Group of West Michigan. Rosemary joined a fledgling NF support group back in the mid-1980's and, shortly thereafter, took over running it along with another colleague, Bette Contreras. Since then she and Bette have turned this group into an instrument of information, education, and emotional support that has become indispensable to the people of west Michigan with NF and their families. Through Rosemary's work at the NF Support Group of West Michigan, she came to know and work with Dr. Francis Collins during his tenure at the University of Michigan. They have continued to stay in touch and remain good friends, and therefore, it was quite fitting that Rosemary was chosen to formally introduce Dr. Collins at the luncheon.

The other person is Rosemary's daughter, Ms. Gillian Anderson. Gillian, who grew up in Grand Rapids and now lives in Vancouver, British Columbia, is the star of the hit Fox Network television series, "The X-Files." Gillian was kind enough to appear at the luncheon which introduced her to Capitol Hill and drew public attention to the NF cause. While in Washington, DC, she took other steps to promote greater awareness of NF and to seek increased funding for NF research. She and Rosemary appeared on the local "Fox Morning News" show, and Gillian taped a public service announcement on NF which is to be aired nationally over the Fox Network.

Mr. President, it was truly wonderful to see how much that crowd admired Gillian Anderson. I think every person who attended that luncheon stayed afterwards to have their picture taken with her and have her sign an autograph for them -- either on the NF, Inc. newsletter or on magazine covers which contained her picture.

However, I was moved even more by the poignant and compelling remarks that Gillian made as the luncheon ended. Her touching comments, revealing her own experience and perspective regarding NF, captivated the audience. I would like to share her comments with my colleagues because I think in many ways, they transcended the issue, Neurofibromatosis, that brought so many people to that event in the first place. Her remarks really conveyed the despair and the hope that surround every disease or condition for which there is no cure or effective treatment. As intimate and personal as her observations were, I believe they warrant expression to a wider audience than was able to hear and learn from them tha afternoon.

Therefore, Mr. President, I ask that a transcript of Ms. Gillian Anderson's remarks be printed in the RECORD.

Gillian Anderson's Remarks Addressing Research for Neurofibromatosis at the Neurofibromatosis, Inc. Luncheon Held in Washington, DC, Friday, May 3, 1996

"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, as entered by Senator Spencer Abraham. NF, Inc. would like to thank Deborah Kac, for taking the time from her hectic schedule at USC to type Ms. Anderson's remarks. Thank You Deborah!
Information here courtesy of the GAGA site. Thanks. All rights reserved �copyright 1997 Neurofibromatosis, Inc.



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