[Congressional Record Volume 142, Number 71 (Monday, May 20, 1996)]
[Senate]
[Pages S5393-S5394]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  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 neurofibroma- tosis. 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 this event for me was meeting and talking 
to two other individuals who played 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 afterward 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 that afternoon.
  Therefore, Mr. President, I ask that a transcript of Ms. Gillian 
Anderson's remarks be printed in the Record.
  The transcript follows:


   REMARKS OF GILLIAN ANDERSON AT NEUROFIBROMATOSIS, INC. LUNCHEON, 
                          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 ever encountered.
       I'm going to read what I've 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; 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

[[Page S5394]]

     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 acknowledgement, community education, and extensive 
     research if we are going to find a cure.
       Thank you very much.
       [Applause.]
       [Small girl hands her flowers.]

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