Pregnancy and VHL, by Yasser Y. El-Sayed, M.D., Maternal-Fetal Medicine, Stanford University Medical Center
- An excellent review of the literature with guidance for women with VHL from an expert in caring for mothers and babies in high-risk situations

"It is critically important to communicate fully with the doctor . . . even if you have no previous symptoms or no clear diagnosis of VHL. This information can make the difference between life and death for mother and child. . . . The patient, family, and medical team need to work closely together."

Three companion articles from women with VHL about their experiences with pregnancy. (All these stories have happy endings!)

Adventures in Pregnancy, by Pat T., Michigan

Karen's Story, by Karen H., Pennsylvania

Renée's Story, by Renée S., Ontario

Laura's Story, by Laura H., Massachusetts

VHLFA Down Under, by Don M., Mississippi
Eva Logan Honored for her work on the Hotline
Two Meetings in 2002:
- Update on VHL in Cleveland October 2002
- Padua Call for Papers, June 2002
Celebrating 50 years of Brain Research,
by Deborah C., Michigan
Carrying the Olympic Torch: Larry Bennett Honored
DNA Testing Update:
- More rapid results in England
- New source in Hungary
- Four sites now offer near-100% reliability
California coverage for people with VHL under GHPP
David’s Marathon, by David I., California
- David and his friend Marilyn completed the Portland Marathon

Annual Report of Disbursements

We are now reaching more than 12,000 people in 67 countries. We are in touch with nearly half the projected number of people with VHL in the U.S., but only 5% worldwide. Service for English-speaking U.S. citizens is moving significantly to the internet, while service to the Spanish-speaking population in the U.S. and Latin America is beginning to build rapidly. This year we distributed 12,000 copies of the VHL Handbook in English, and 900 copies in Spanish, and 7000 copies of the Spanish book for doctors. Operating expenses rose a modest 17%.

57% Research

32% Education & support

6% Public relations

2% Fundraising

3% Administration

Total Revenue for Fiscal 2001 (ended June 30, 2001) was $186,636.62.
Of this, a total of $100,000 was allocated to research funding.

We pay no salaries, we do not rent office space. The money we raise goes directly into programming and research, with only 3% for administrative costs. We are able to do this because of the hard work of a large number of dedicated volunteers in 17 countries around the world, who provide outreach in their local areas.

This year we awarded $100,000 in research grants, bringing the total to $440,000 over the last five years.

Call or write for a list of special projects that need funding. For example, we want to set up an inquiry line in Spanish language, and design better support for asymptomatic youth diagnosed through DNA testing.

Let's do it again! Let's Cure VHL in this decade!

As printed in the VHL Family Forum 9:4, Annual Report 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.