Unfortunately, raising money for an organization is never an easy or likable job. It is probably one of the most distasteful jobs in an organization. However, without it a voluntary group can not survive. For those of us who have VHL and the many people who are affected by it, the VHL Family Alliance provides us with information and support and is pursuing research into this disease. To do these things a group needs money.

Here in Cork, on the south coast of Ireland, every year our regional newspaper holds a Ladies Mini-Marathon road race which is 5 miles long. This year approximately 3,000 women of all ages took part. The majority of them just walk or jog the 5 miles. However, every person who participates uses it as a means of raising funds for the organization of their choice, i.e. Rape Crisis Centre, AIDS Research, Multiple Sclerosis, Leukemia, etc. This year we had 31 participants completing the race for research into VHL and for the VHL Family Alliance.

We all sold sponsorships for the people completing the race, as did they themselves. Everybody said how willing people were to sponsor them and were glad to see research into this familial cancer. Unfortunately the majority of people have been affected by cancer, of one kind or other, through either a family member or a friend. The VHL gene not only affects people with von Hippel-Lindau disease, but is also involved in the majority of renal cancer in the general population. Understanding how this gene works will also help researchers understand how faults in other similar genes contribute to certain types of cancer.

On the day of the race itself everybody had a marvelous time. We all met beforehand, took photographs and generally enjoyed the atmosphere and excitement generated by the people participating in the marathon. The weather was ideal on the day, it was cool and dry. At the finish everyone received a lovely bronze medal for completing the race. A couple of the girls said it was the first time they had ever received a medal for anything! We all then went to a pub for sandwiches and refreshments. For some of us, the day was more like a full marathon than a mini-marathon, as that night we ended up going to a disco at a local hotel and some of us had our VHL tee shirts still on us.

The £3000 we raised (nearly $5000) was donated to the VHL Family Alliance and VHL research in England and America. Every donation helps to continue the important work being carried out by this group and the vital research work which is needed to get to the stage where we can manage VHL and one day find a cure for it.

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.