Local Meetings

Belgium, by Chris Hendrickx

We had a meeting November 10, 1997, to discuss incorporating under Belgian law. It’s so exciting to see it becoming a formal organization! Even though there is a Dutch support group an hour north in Holland for the Flemish-speaking people and a French group for the French-speaking people two hours south in Paris, nonetheless it is important to have a Belgian group that understands the medical system and culture of Belgium.

Denmark, by Richard Harbud

The Danish affiliate has begun a homepage for Scandinavia at http://www.vhl.dk. There is a description in Danish of the work of the local group there, and contact people who speak Danish, Norwegian, and Swedish. Many thanks to Richard and Vibeke Harbud for making this happen.

Illinois, by Ellen & Bob Lydon

Dr. Daniel Dalton, urologist of Northwestern University spoke with a group of twelve members in Chicago, an excellent first meeting. They are planning another get-together in March, this time on a weekend day.

Indiana, by Kathy & Andy B.

The first Indiana meeting was very well organized and attended. 32 people came from as far away as Illinois and Mississippi. Cindy Hunter, M.S., a genetic counselor from the University of Indiana, spoke about DNA testing issues for VHL families.

Louisiana, by Peggy & Don M.

We had 28 folks in attendance. Dr. Jim Gnarra of the Louisiana State University Medical Center gave a presentation on the history of finding the VHL gene, his own research into VEGF, and the three areas of research his lab is focusing on.

Massachusetts, by Laurel Newson

Fourteen people from the Massachusetts chapter met in September with Dr. Karol Krzystolik from Poland. We had an excellent discussion about DNA testing, and the right to know or not know the results. A "Team VHL" contingent participated in the annual Dana Farber Jimmy Fund marathon and walk helping to raise money for Dr. Kaelin’s research.

Dr. Richard Klausner, Dr. Eamonn Maher and Dr. Hartmut Neumann spoke at Dana Farber Cancer Research Center in November as part of the 50th anniversary of Dana Farber.

Minnesota, by Lois Erickson

We had our first Minnesota VHL meeting August 23. There were thirteen people present, and a number who were unable to attend. There were quite a few new members hungry for information and excited about the Alliance, as we were in 1993.

Everyone seems really "tuned in" to the internet! I will have to go to someone’s house and go through the VHL section, http://www.vhl.org

New Zealand, by Val & Jon Johnson

The New Zealand group is growing, with new contacts coming both from doctors in New Zealand and Australia, and over the internet. They are in the process of arranging meetings with the Northern Regional Genetic Service at Auckland Hospital to establish a screening protocol for families with affected members.

Pennsylvania, by Maria S.

The State of Pennsylvania will have two chapters, using the telephone area codes to distinguish them. The Eastern division held a small first fund-raiser in August. Additional activities will be planned for the new year.

As published in the VHL Family Forum  5:4, December 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.