Reporting 3 Exciting Conferences, Fall 2008
Symposium in Denmark 2008
In September 2008 the 8th Biennial Medical Symposium on VHL was held in Roskilde, Denmark, outside Copenhagen. One hundred twenty-four people from 16 countries on five continents gathered in this ancient capital of the Vikings to learn from one another and build up our knowledge of VHL. There were 82 people from 10 countries of Europe, 17 from the U.S., 2 from Canada, one from Brazil, 4 from Australia, 5 from Japan, 2 from China, and for the first time, one from India.
Conference chairman, Dr. Marie Luise Bisgaard, and conference chairman Vibeke Harbud did an outstanding job of organizing the meeting and treated all the attendees very well indeed. The First International Medical Symposium on Birt-Hogg-Dubé syndrome was held on Wednesday before the VHL meeting, to leverage the travel of the many scientists who work on both hereditary kidney cancer syndromes.
Thursday was a day for the molecular scientists to share their findings, put forward their hypotheses, and find collaborators to answer some of the open questions. Even to those of us who understood about ten percent of the content of this highly technical day it was clear that the amount we have learned in the past fifteen years has been nothing short of phenomenal.
Dr. Peter Maxwell of Imperial College, London, England, noted that when he began attending these meetings ten years ago (Paris 1998) we were only beginning to understand what VHL did. Now we know a number of additional steps in the many pathways where VHL plays a role. We have learned a great deal, which in turn has taught us more about what we don’t know.
Those “Types” of VHL, for example, are helpful to scientists in understanding the role VHL plays in the cell. They are not, however, particularly helpful in the clinic. The percentage risk of a particular tumor type varies from one mutation type to another, but none of them in zero. In the clinic, we still have to screen for all possibilities.
Thursday was spent working to understand what happens in the cell. Friday and Saturday were spent on clinical work – how to improve diagnosis and management of VHL tumors, and how to assist people in living with the stresses of VHL.
Detailed reporting on the conference is available at http://vhl.org/conf2008 including
- A one-hour webinar with Joyce Graff
- Joyce’s detailed report of the conference
- The abstracts submitted by the presenters
NCI Translational Science meeting
In November Dr. Michael Atkins, Dr. Othon Iliopoulos, and Joyce Graff were invited by the Director of the National Cancer Institute (NCI) to participate in the NCI Translational Science meeting in Washington.
Since 2005 a committee of researchers and patient advocates has been evaluating the projects currently being funded by the NCI, to determine how we can speed up the “translation” of research from basic research in the laboratory to actual treatments in the clinic.
They determined that the process of translation requires a much more managed process, like an engineering process in any other industry. In November more than 500 researchers who are currently being funded by the NCI, plus 72 advocates and NCI staff, came to Washington and review posters summarizing the state of their research, and to identify what components are missing to speed their translation.
As one example, there is an urgent need for “biomarkers” to identify people at risk for various cancers, and to measure how much disease is present, so that we can choose the best treatment approach that will benefit this patient.
NCI will be continuing this process throughout the year, and more advocates will be needed to help guide the process, and to keep the scientists focused on delivering solutions to patients. If you are interested in becoming a research advocate, please contact Joyce Graff, director at vhl.org
Texas Regional Meeting, Houston
In November Dr. Eric Jonasch of M.D. Anderson Cancer Center in Houston hosted the second annual Texas Regional Meeting of the VHL Family Alliance. There were a number of excellent presentations, some of which have already been captured as Webinars, available for replay on the web.
Replays of the 2007 Houston meeting are also available for replay – now free on the VHL website.
Go to vhl.org/meetings for the Meetings Archive. Individual presentations may now be played free on the website, or a DVD of the full meeting is available for purchase.
In the same way, presentations from the 2008 and 2007 Annual Meetings (Boston and Orlando) are now available for free viewing on the website.
Don’t forget:
As printed in the VHL Family Forum 17:1, January/February 2009. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.
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