We are very sorry that Val and I couldn't make the conference in Paris this year, however we are pleased to report that our group in New Zealand is slowly growing as more and more individuals become aware of our activities. It has certainly surprised us how many patients and supporters have come forward for information and help since we returned from the conference in Hawaii two years ago, and it is particularly pleasing to be able to offer them assistance based on Family Alliance material, and be able to tell them that they certainly are not alone and many individuals in the Family Alliance and medical personal throughout the world are making inroads into research and patient treatment and care.

Progress here has been made with us gaining the support and help from the Northern Regional Genetic Service, which covers a large section of New Zealand and with the help of Ingrid Winship and her staff we are in the process of gaining support from various medical specialists who have an interest in VHL.

We have also managed to receive some financial assistance from our Lottery Commission to offset initial setting up costs and hopefully arranging our first meeting ( mini conference ) involving medical staff and families. It is hoped to arrange this in Auckland in 1999.

We would like to wish all those attending this years conference the best, and let you know that even down here on the other side of the world we are thinking of you all and would like to express our gratitude and appreciation for the many hours many of you put into trying to beat and treat VHL.

We are looking forward to following the progress made since Hawaii. Regards, Jon & Valerie Johnson

As printed in the VHL Family Forum 7:1, March 1999. For permission to reprint, please contact VHL Family Alliance, info@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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