Know Your Mutation! by Berton Zbar, M.D., National Institutes of Health
Research Progress - with your help! - with your help! - report on progress on crystallizing pVHL, by Dr. Diana Griffith, Massachusetts General Hospital
Hearing Aid for VHL Patients with Bilateral Endolymphatic Sac Tumors by Marangos, Kempermann, Neumann et al.
Recent Insights into the Functions of the von Hippel-Lindau Protein by William G. Kaelin, Jr
Second VHLFA Research Grant awarded to Dr. Othon Iliopoulos, Dana Farber Cancer Institute.
Chapter Events - Michigan, Delaware, Britain, Ireland, New York, North Carolina, Mid-South, and Arizona
Success and Recognition, by Paul B., Quebec, Canada
Miracles, by Audrey C., North Carolina
Plans for Conference 1997 - Bethesda, Maryland, May 2-4, 1997
The VHL Athlete, by Jennifer K, Australia
Eddie's Story, by Linda G., Georgia
Gifts that Endure - bequests and charitable remainder trusts
Reaching More People, Funding Research - VHLFA Annual report, Fiscal Year 1996

Jennifer K. of Australia has been preparing herself over the last year for a tricky surgery on a hemangioblastoma at the second cervical vertebra (C2). She has been through other surgeries before, and was of course not looking forward to the experience, but knew she had to go through it to get beyond the current set of symptoms, the numbness and weakness and lack of coordination in her arms and hands.

She looked for role models. She especially disliked the characterization in British parlance of a patient as a "sufferer". "Electing an operation is not choosing to suffer, it's choosing to go through a difficult, harrowing, even life-threatening experience in order to achieve a goal."

She noticed that marathon runners, or competitors in triathalons, also push themselves up to and beyond their physical limits. They endure pain, thirst, and suffering, all to win the prize, to compete sometimes more with themselves than with the others in the race.

In preparation for this surgery, she and her medical team took two important approaches. First, at Jennifer's request her medical team sought second opinions from neurosurgeons around the world. While they are excellent neurosurgeons in their own right, her team has limited experience with hemangioblastoma of the spinal cord, and were glad to confer with other physicians with greater experience with this tricky kind of tumor on the best ways to approach it.

Secondly, Jennifer herself trained for this event as if she were training for a sports event. She made sure her body was healthy and strong, tuned with vitamins and healthy natural foods, and that her mind was strong as well. Through meditation and guided imagery she pictured the surgery going well, the surgeons confident and successful, and her body helping to minimize bleeding and recover quickly. She used techniques from sports psychology.

On Sunday November 3 Jennifer and her surgical team ran their marathon. By evening Jennifer was awake, squeezed her husband Bruce's hand, and wiggled her toes. Everyone cheered, not only in Australia, but throughout the world. Our VHL Athlete had won the first event in her triathalon. There is still physical therapy to go, to recover the full use of her arm, but we are delighted to report that Jennifer and Bruce and their medical team are champions once again.

As published in the VHL Family Forum, 4:4, December 1996. 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.

mystory