It's in the Genes ... of some Pretty Terrific People

Total Revenue for Fiscal 2005 (ended June 30, 2005) was $217,855. Of this, $120,000 was allocated to research funding

Of our Expenses: 53% Research 29% Education and support 4.6% Fundraising 13.2% Admin

Thanks to your generosity, we were able to fund four new proposals -- a total of $120,000 or 53% of our total expenses this year.

...of Miss North Carolina

We need your help to find the cure. The pace of research is picking up. Every week there is something new in the news that will have implications for treatment of VHL -- just not quite yet. There is work to do in “translating” the basic research into treatments, testing those treatments for safety and effectiveness, and then getting them approved for VHL. But this year we received a number of exciting research proposals that will take us farther down this path.

...of an aspiring rap artist...

But the future is not our only concern. Meanwhile there are still people struggling to get a diagnosis, or to get optimal treatment for the tumors they are dealing with today. Our Hotline now serves people in three languages: English, Spanish, and French. Our website vhl.org serves more than 20,000 people each month, coming from 107 countries. More than 100 people attended five regional meetings around the United States alone. And 600 people participated in our five online support groups in English, Spanish, French, German, and Japanese.

The third edition of the VHL Handbook was distributed to our entire mailing list last December. The Handbook assists patients and their local doctors in monitoring VHL, finding issues early when they are more successfully treated, and choosing the best moment and method for treatment. It is important to get this information to that local doctor-patient team in order to make the biggest difference in diagnosis, treatment, and quality of life. For this reason, teams of volunteers have helped to make local language versions of the Handbook available free on the internet in Spanish, French, Chinese, Arabic, German, and Danish. Additional translations will become available this year: Croatian, Dutch, Hebrew, Italian, Japanese, Portuguese, and Ukrainian.

Funding for all our activities comes from you, our members and friends. We depend on your generosity to support our educational programs and to fund research.

You’ll notice a little seal and ribbon on our report this year, an award from the Independent Charities of America (ICA), acknowledging us as one of the best charities in America. This seal is awarded to members of the ICA who have undergone rigorous independent review, and have demonstrated each year that they meet the highest standards of public accountability, program effectiveness, and cost effectiveness. Of the 1,000,000 charities operating in the United States today, it is estimated that fewer than 50,000, or 5 percent, meet or exceed these standards, and, of those, fewer than 2,000 have been awarded this Seal.

Please help us continue this important work. Thank you.

Thank you for including me as a member. I will gladly spread the word to my circle of friends. I can think of nothing better than to bring more attention to VHL and the work to find a cure. -- M.A., Calif.

I was only 10 when my Dad died of VHL, so I was confused and afraid. Thank you for offering the information I was searching for. I now feel I understand what it was all about. I am overwhelmed that there is hope that a cure will be found in some years time. It will be a genetic breakthrough for all the families suffering from the effects of VHL. I admire each and everyone of you. -- N.C., England

We Depend on Your Support -- Thank you!

As printed in the VHL Family Forum 13:3, Annual Report 2005. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.