With contributions from affected individuals and families, physicians, researchers, progress is being made every month. We look to all disciplines for ideas on how to manage von Hippel-Lindau disease. What can you contribute? Your expertise in a given medical area, your experiences in coordinating care and sharing information among health professionals. Your experiences and ideas with diet, massage, immunology, vitamins — literally anything which might contribute to improving diagnosis, treatment, and quality of life for people with von Hippel-Lindau disease. And of course, your moral and financial support.

You will hear about some of these breakthroughs in Kansas City.

Dr. Hartmut Neumann from Germany will share some of the many insights he has gained in the 20 years his team has been working with more than 100 people with VHL in Germany.

Speakers from University of Iowa, University of Kansas, and Mayo Clinic will share some of the special insights they have gained through teamwork — teams of medical professionals working together with the families to manage their long-term health.

Dr. Haring Nauta and Dr. John Adler will talk about improvements in treatment of brain and spinal lesions, including work to reduce the dosage of radiation and improve the accuracy of stereotactic radiosurgery.

Hetty DeVroom brings us news of some of the exciting research going on at the National Institutes of Health, including a paper being delivered at the Neurosurgery meeting the previous week on the effect of hormones on the growth of VHL tumors.

In the newsletter families continue to share their stories so that we can learn from their experiences. What is quite clear from what we have learned in this first year together is that the key ingredients in managing our health are an early diagnosis, a conscious program of check-ups, and just the right amount of careful treatment. It takes teamwork -- among the patient, the family, and the members of the health care team -- clear communication, understanding, and sharing of the latest news.

Together we can do it. Please join us in Kansas for the kick-off. This is the year we begin making VHL stand for Very Happy Life!

Who's Coming?

As this issue is going to press, it is still early in the registration process. At this point we know that we will have participants from California, Georgia, Hawaii, Illinois, Iowa, Kansas, Maryland, Massachusetts, Michigan, Minnesota, Missouri, New York, Oklahoma, Texas, Washington, Wisconsin, Germany and Australia! Jennifer K. is starting up an affiliate of the VHL Family Alliance in Australia.

Fred Johnson will join Craig Warnick and David Torres on the program Sunday morning. Fred is a VHL spouse who is an Information Systems Trainer for the General Board of Global Ministries at the United Methodist Church. His wife Altheada is the startup chair of our New York Chapter.

We hope you'll be with us in Kansas to share your own knowledge, and meet everyone. It won't be the same without you!

-- Lois Erickson and Cindy Dearing, Co-Chairs,
the Kansas/Missouri Chapter,
and the University of Kansas Medical Center.

As published in the VHL Family Forum, 2:1, March 1994. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.