Annual Report, 1996-1997

Each year at this time we report to you where the money went. Our budget falls into three main cateogories: Education, Conferences, and Research. Expenses shown in this report are primarily for U.S., including publication expense for all English-speaking countries and worldwide distribution of English-language materials. Non-U.S. affiliates are self-supporting.

The second edition of the VHL Handbook was published this year. More than 6000 copies of this new Handbook have already been distributed, and orders are being received from hospitals and medical schools.

Two research grants were awarded, and a total of $36,000 was paid out for research.

The Tissue Bank is operated under a grant from the National Institutes of Health by the University of Maryland, with no charge to our budget. Arrangements can be made for donation of tumor tissue by calling before surgery 1-800-847-1539.

This operating budget of $38,143 serves more than 7000 people in 37 countries (see Figure 1) through the newsletter, the Handbook, the internet service, and a strong people-to-people network formed by volunteer families and physicians across the globe. This represents an increase of 27.5% in the number of people served since last year.

As shown in Figure 2, this year we spent $38,143 for VHL Education, and $36,000 for Research. The conference expense is the excess of expenses over revenue for the Bethesda and Hawaii meetings.

Our goal this season is to raise $80,000 for the coming year: $40,000 for research, and $40,000 for education. The number and size of the research grants will depend upon your generosity. We can only spend what we have. We are all volunteers. We pay no staff; we do not rent office space. Our modest expenses go directly into programming and research.

Our most exciting new program for 1998 is the Teen Conference Call, beginning monthly in January (see announcement, page 5). We are looking to our teenagers and their professional advisors to help shape this service to meet their needs. This program is being planned to support young people newly diagnosed with VHL through their sensitive teen years. An increasing percentage of these have never had a symptom -- they are mostly diagnosed through DNA testing and routine screening. Their needs are very different from those of people grappling with medical situations.

We need your help! We are already making a difference, bringing closer the day when there will be a better medical management for VHL and strategies for preventing tumors.

We realize that not everyone can contribute money, and we want to make sure that everyone has the information they need. If you can afford to give, please give a little extra for the person who can’t. And if you can’t afford to give at this time, perhaps you might suggest to a friend or relative that they contribute in your honor rather than buying you that holiday gift. Or have a garage sale or craft sale for benefit of VHLFA.

If every family could help contribute an average of at least $100, we would more than meet this goal. Be a Leader in promoting research --

    If not us, then Who will do it?

        If not now, When?

Best wishes for health and peace now and throughout the coming year.

-- Joyce Graff, Peggy Marshall, Kelly Heselton, and all the Directors

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.