1993 is quickly coming to a close, and our first year of operation is nearly done. Be sure to send your membership by the end of January 1994 to be a Founding Member! We will still welcome new members, of course! but those who helped to pioneer this organization during this start-up year will always be special to us.

Kansas/Missouri Chapter

The Kansas/Missouri Chapter met in October in Kansas City, with 21 people present, sharing their stories and their questions. There are now state contact persons in 17 states. Call our 800 number to reach the coordinator in your area, or to volunteer to be a state contact or coordinator.

The Year in Review

Our primary goals this year were:

to reach out and find VHL families throughout the country, and begin to pool our learning
to make contact with VHL families in other countries, to learn too from other cultures, other health care systems
to establish a base of educational materials
to raise the level of awareness of von Hippel-Lindau disease among medical professionals and the general public

We feel we have made a very good start, and look forward to building upon these beginnings in 1994.

Reaching Families in North America

We are now in contact with nearly 1000 affected people in the United States and Canada. A large percentage of these are members; others are reached through physicians and genetics counselors.

Contacting other Countries

Our sister organization in England is in contact with numerous families in England, Scotland, Ireland, Wales, and Canada.

We are now in correspondence with physicians in some twenty countries, and are beginning to reach families in those countries. As shown in the article from France in this issue, we are interested in learning the experiences of VHL in many countries, the familial variations which may be clearer there than stirred together in America's "melting pot," and the differences in treatment among the different health care systems and different medical traditions.

Publications

We met our publishing goals of: four issues of the VHL Family Forum; two pamphlets: Your Family Health Tree and the VHL Handbook; two brochures: What is VHL? and Not So Rare After All.

We now have good, portable, easy to read answers to questions like "What is VHL?"

Awareness

We made a good beginning. More than 20 telephone and computer information services now know about VHL. We displayed brochures at medical meetings, and were listed in numerous professional publications, which brought inquiries from a wide range of social workers, genetic counselors, nurses, and medical professionals. Several members were successful in getting their stories published in local newspapers.

The mainstream press has been slow to pick up news about VHL -- news which is so very interesting to us but which affects a small percentage of TV viewers. Nonetheless, a great many more medical editors now recognize the name "VHL" than this time last year, and that is a valuable first step.

At their November meeting, we were accepted as a full member in the National Organization for Rare Disorders (NORD)!

Pat Yourself on the Back!

Thanks to you -- your help, your funding, your encouragement, we are off to a wonderfully strong beginning. We look forward to your continued participation in the coming year -- it is your willingness to share your learning -- your experiences or your professional research -- which are helping to bring together a wealth of information about VHL which has never before been available. We give extra special thanks to our many friends and unaffected relations whose continuing financial and moral support make this work possible.

Join us for the First Annual Meeting!

We look forward to our Annual Meeting in Kansas City the weekend of April 16-17. Individuals and families affected with VHL, their friends, and health care professionals from several countries will have an opportunity to share their experiences, ideas and questions about VHL. Leading researchers will share the latest developments in diagnosis and treatment.

Most important, it will be an opportunity to get practical information and support from others who are dealing with this challenging disease. It won't be the same without you! The specific session announcements and information for registration will be distributed in February.

Goals for Next Year

According to the geneticists, there are 6000 people with VHL in the United States alone. We want to find the other 5000 people, make sure they have a diagnosis of VHL, and the information they need to maintain their health.

With your help, we will be undertaking publicity and projects to help make VHL a household word. The more we can do to make people think of VHL as a possible diagnosis, the more likely we are to find the other people who are out there dealing with a frustrating collection of seemingly unrelated symptoms, with no weapons to combat this disease.

Pick a project -- we need your help!

Thank you!

As published in the VHL Family Forum 1:4, December 1993. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.