Research Digest

It has been an exciting and challenging year for the VHL Family Alliance Research Program.

We are very pleased with the three grants 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. Even though two of the grants funded this year are great science and will teach us a great deal, their translatability into clinical practice is decades away. 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.

My vision is to work 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 accesss 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  11:4, Annual Report 2003.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.