Exciting Progress With Your Help

In January 2009, the VHL Family Alliance turns sweet sixteen.  This has been a wonderful year of celebrating what we have already achieved, and reaching out toward the future.

Over the past two years we have worked to build a Research Infrastructure that will encourage more researchers to study VHL, and facilitate their work. 

Our partner and storage of tissue bank, National Disease Research Interchange (NDRI) in Philadelphia takes excellent care in transport.One tumor becomes multiple samples for research. To date 35 people have donated 412 samples. These days the researchers are often studying not just VHL, but a particular type of VHL mutation.  To support this research, we began requesting a copy of the donor’s VHL DNA analysis. Our members  have responded wonderfully to this call; we have already accepted 20 DNA reports

As this resource grows, an increasing number of researchers are drawing samples from the bank.
Our Education Service activities have grown considerably this year as well.  We moved the website to a more modern base, which gives us opportunities to enhance the site.  You will see a continuing evolution of the site, and we hope that you will continue to provide your feedback about what you like and what needs improvement.

We continue to look for the optimal format for recorded presentations.  This year we are offering a series of Webinars which people can attend live, or play the pre-recorded session.  VHL 101, a session on pre-implantation genetic diagnosis, and a recap of the Denmark symposium are online now, with a series of excellent medical presentations slated for the next several months.  Your feedback will be essential.

Take two pills a day, and you’ll never get another tumor.  That’s the dream.  How realistic is it?

This year at the Kidney Cancer Symposium in Chicago, it was almost entirely about the drugs.  These drugs are based in large part on research on the VHL gene.  Several of them hold promise of being able to control the development of new tumors, or to keep existing tumors small.  The challenge is to test these drugs with people with VHL, to determine whether they are effective against VHL tumors, and what their side effects look like in people with VHL.  Each next-generation drug is better targeted, with fewer or less burdensome side effects.  We encourage people with VHL to consider participating in a clinical trial and help us find the maintennce drug we would all love to have.

Internationally our activities have expanded this year. At the medical symposium in Denmark in September we had our first  presentation ever from India, where a doctor in Kerala province has identified three families with VHL and has been studying them for four years.  In March Altheada and Fred Johnson went with Joyce Graff to Johannesburg, South Africa, to meet with 55 patients and family members to talk about VHL, and coach them in setting up an affiliate organization there. 

Please help us fight VHL.

Report for Fiscal 2008 (ended June 30, 2008)

*Preliminary numbers; Audited financials will be available end of November

Total Revenue for Fiscal 2008 was $299,278 Of this, $75,555 was allocated to the Research program, for grants and Tissue banking.

Of our Expenses: Research -   $75,555 (29.2%) Education & Support-   $127,684 (49.3%) Fundraising -   $7,688 (3.0%) Management -   $48,039 (18.6%)