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

by Peggy M., Chair, 800 line Committee

Living with VHL is a roller coaster existence with its ups and downs. I was diagnosed with VHL in 1962. There are nine members of my family diagnosed with VHL and the difference in each is quite unique. Everyone’s case is different and we all have difficult roads to travel. We struggled for years seeking information about von Hippel-Lindau with our limited resources. For the most part, we learned about VHL the hard way -- through surgeries and experiences. We do not have to do that any longer.

$100,000 for Research in 2001 -- Let’s do it again! What can you contribute? Every little bit helps! Write us in on your United Way Campaign U.S. Federal and postal workers and military personnel can designate CFC donations for VHLFA (2005 Federal CFC # 9710) Gifts of appreciated stock offer tax benefits to the donor as well as benefits to the Research Fund. Call to arrange transfer to the VHLFA account, 1-617-277-5667.

Give Now!

Having worked closely with the VHL Family Alliance now since 1993, serving on the Board for seven years, talking with hundreds of families on the 800 line, sending information packets to all the new members, my husband Don and I are convinced that education, early diagnosis, early prevention, and appropriate treatments are the answer to living with this chronic condition.

The VHL Family Alliance provides a wealth of information about von Hippel-Lindau. Support is offered in many ways: through our website, www.vhl.org, through the toll-free telephone line 1-800-767-4845, via E-mail to info@vhl.org, through this quarterly newsletter, and through local and international meetings. We have online discussion and chat groups in four languages: English, Spanish, German, and French, all moderated by trained volunteers who have VHL themselves. Medical information and consultation is made available to local physicians through our Clinical Care network.

These programs are supported with your membership dues and donations. Each of our programs grew more than 24% this year, while we held expenses quite steady. As you will see in this issue, research interest in VHL is increasing. Our research grants continue to be strong and hopeful with your generous support. We have more proposals each year. The number and size of the awards is dependent upon your generosity.

We need you to continue supporting our mission to improve diagnosis, treatment and quality of life for people with von Hippel-Lindau disease. Please give generously to sustain our educational programs and to make it possible for us to fund more exciting research and find a cure for VHL.

Give now!

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.