We are very pleased with the grant we awarded this year. The remaining applications we received, while worthy, were predominantly in the area of more basic science. And while there is always more to be done in understanding how VHL ticks, it costs a great deal of money and we cannot hope to support it all.

I really believe that we should be more active in promoting immediate impact, high-risk, high-reward types of proposals -- things that have patient care at the forefront.

We want to focus on funding young scientists, helping them accumulate sufficient evidence so that they can go for larger grants from NIH, and encouraging them to study VHL. As a patient advocacy organization we want to fund things that will impact patients most rapidly: clinical trials, new strategies in constraining tumor formation, etc.

We are actively working toward a national repository for tissue and data which will facilitate research on VHL and assist in measuring the results of clinical trials. In addition to the Tissue Bank, if we also had a database where scientists could have easy access to valued reagents, it would greatly bolster and facilitate research.

All in all, I think the progress being made is great. Unfortunately I have the patience of a hyperactive school kid waiting for a cookie. With the help of donations from all our good friends, the guidance of our Medical Advisory and Research Review Boards, and the scientific contributions of our collaborators worldwide, we can do more to facilitate and sustain the pace of advancements.

As printed in the VHL Family Forum 12:3, November 2004. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.