Celebrating 50 years of

Brain Research

by Deborah C., Michigan

On October 9-10, 2001, on the campus of The National Institutes of Health (NIH) was held a wonderful celebration of the last 50 years in brain research. The group that assembled for this symposium was primarily neuroscientists, clinicians, and researchers. Much of the ongoing research being done by these groups was funded through the National Institute of Neurological Diseases and Stroke (NINDS) or the National Institute of Mental Health (NIMH). They gathered to celebrate the wonders of what has been achieved so far and what great things lie on the near horizon.

The remaining people who gathered to listen in had various interests, hoping to learn any new bits of information that might apply to their individual needs. Thus, I found myself amongst learn’ed company, representing the VHL Family Alliance. I’d like to share with you pieces of my experience that clearly apply to each of us…

On arriving, I was struck by the theme of the symposium- "New Discoveries, New Hope". There was that word, "Hope", just like our own, "Hope for a Cure".

It became increasingly clear over the course of the next two days that new discoveries truly are happening all the time, and with each there is yet another stride forward in the journey toward understanding and curing a myriad of diseases. Real Hope!!

Especially significant were the advances in research and learning in respect to Parkinson’s, Huntington’s and ALS (Lou Gehrig’s disease). These diseases seem remarkably similar to VHL (in a genome sort of way). As the human genome has now nicely been "unraveled," progress toward real understanding of how to repair those genes with altered proteins (which cause so much chaos in our bodies!) is progressing at a remarkable rate. One speaker went so far as to say that she felt it was not overly optimistic to hope for a cure for Huntington’s by 2010! Human drug trials begin in 2002.

That is good news for us! For as researcher after researcher explained their projects, it was easy to see remarkable similarity between all diseases in the brain and VHL. The diseases that were most discussed were; Alzheimers, Parkinsons, Huntingtons, ALS, Schizophrenia, Depression, and Manic or Bi-Polar Syndromes.

Brain research in all of those areas employs the reductionist approach; this simply means that each of them is studied at the smallest level possible-their molecular and cellular functioning. At this level the workings (or not!) of the cells becomes dramatically clear. In order to change the course of diseases, manipulation, both chemically and physically, is being experimented with. It is so much simpler to find treatments and cures when the problems are so basically understood. Neurons, our basic nerve cells, are now being successfully generated (Hooray for stem cells!) for use in diseases where healthy neurons are in short supply, like Parkinsons or Alzheimers.

The good news is that whatever is valuable and useful for these "neurological" diseases, is also valuable and useful for the VHL community. The world is watching expectantly (especially us!) as the medical community makes huge strides in the direction of cures for debilitating diseases.

The Center for the Study of Neurological Injury is spending a great deal of time learning all it can about spinal cord injury and stroke, respectively. Research varies from injection of stem cells to recover function in the spinal cord, to fighting the battle to keep cells alive after oxygen deprivation due to stroke. All of these approaches have relevance to those who deal with the various symptoms of VHL.

I know that, personally, I was pleased to learn more about "brain plasticity"- The amazing ability of the human brain to continue to learn and adapt. It was both wonderful and reassuring to know that our brains are not static, but are creating new neural pathways always. (After 9 brain procedures, and more to come, that was a decided relief to me!) As this researcher noted, "the brain is a continuously functioning organizing machine. It handles 10s of 1000s of bits of information in a reliable and retrievable way." What an awesome entity!

As medical science continues to seek out the whys and wherefores of behavior and disease, we all benefit. In the most recent AARP Bulletin was an article on Parkinson’s and Politics in which the major role of research in the hunt for a cure was discussed. Its author has a spouse who is suffering the debilitating effects of the disease. He has become very involved in making certain that funding remains high for research to cure the disease. The article reiterates what I heard myself, and that is that funding remains at a very high level (at least at the NIH, etc.) and there no expectation of budget cuts. So, have no fear. It seems that funding will remain at an all time high; especially as it is recognized that so many cures may be "just around the corner".

Christopher Reeve -- best known for his role as "Superman" -- spoke to the assembly on Tuesday afternoon. Since an accident in 1995 he has been a voice for all paralyzed Americans. Mr. Reeve spoke briefly and poignantly, likening his situation to the building of the Transcontinental Railroad. Imagining himself as the group of railroad workers that started building toward the west, and the medical community as the group that made its way east to meet them, he gave shape to the idea that health care responsibility lies in the hands of the patient and the provider. He said, "I am doing my part by fighting against things like muscle atrophy, osteoporosis, and other things that I call chair-caused damage. But you (the doctors) must do your part. Remember that the National Institutes of Health are not "The National Institutes of Research"… basic research should lead to therapy." He concluded by saying, pointedly, "I’ll meet you in the middle."

As a person who lives with VHL, I know that I too have learned the lesson of "active waiting." I am careful to try and choose a healthy lifestyle and do those things which challenge me to be the best that I can be. Who among us does not live daily a life that alternates between happiness, terror, wonder, disappointment, relief, and waiting? Hard work. We are doing our part … rest assured that our scientists and researchers are doing theirs.

Authors’ P.S.- I think of the collective experiences of all members of the VHL Family Alliance as a Volume of Heroic Living. (I work at a library.)

As printed in the VHL Family Forum  9:5, December 2001.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.