Seattle Patient/Provider Conference

"I was so impressed and elated with the Seattle Conference. It was such a pleasure to meet you and the others. I am so glad that I attended." -- Maria S., Pennsylvania

"I enjoyed the conference. As usual it brought together some interesting people and showed some real problems with the health care delivery system. I am always humbled by the courage and perseverence the VHL Alliance members show." -- Peter Choyke, M.D., National Institutes of Health

The Fifth International Patient/Provider Conference on VHL (Seattle) took place June 5-7, 1998, in Bellevue, Washington, outside Seattle. The conference was wonderful! Alice Coday, VHLFA Washington chapter chair and conference co-chairperson, designed an outstanding meeting that covered lots of important issues, was well-paced and pleasant, and offered lots of time for interaction among the attendees. Robin L. Bennett, M.S., conference co-chair from the University of Washington, and several other genetic counselors, were with us throughout the meeting, and a number of physicians from the Washington area attended. We had four outstanding speakers from the National Institutes of Health. One family drove all the way from Minnesota. Altogether we had eighty-four people from 22 U.S. states and 2 Canadian provinces -- Arizona, British Columbia, California, Colorado, Georgia, Idaho, Indiana, Iowa, Kansas, Maryland, Massachusetts, Minnesota, Mississippi, Nebraska, Nevada, New York, North Carolina, Ontario, Oregon, Pennsylvania, Tennessee, Utah, Virginia, Wisconsin, and of course Washington!

Friday’s presentations were on employment rights and legislative concerns related to genetic factors in health. Friday evening at the patient panel included a particularly rich discussion of men’s feelings, both as patients and as spouses.

Saturday Dr. Roberta Pagon of Seattle gave an overview of VHL, and explained how to go about getting DNA testing. Dr. Gladys Glenn of the U.S. National Cancer Institute in Maryland followed with a discussion of the "state of the art" in the VHL clinic there, and the usefulness of DNA testing information in clinical practice. Dr. Peter Choyke, also of the National Institutes of Health, presented NIH’s findings on organ preservation. After nearly ten years of investigation, their findings support treatments that preserve normal organ function, especially kidney and pancreas, but including preservation of the adrenal cortex when pheos are removed. There were reviews of kidney, eye, ear, and central nervous system tumors and their treatments, and Robin Bennett shared her thoughts on improving communications between patients and professionals.

At lunch on Saturday Susan McGuire and Kathy Braden were duly elected to the Board of Directors, and two new research awards were announced: to Dr. James Gnarra of Louisiana State University and to Dr. Robert Burk of Albert Einstein School of Medicine in New York. Both will work on understanding different facets of the role of the VHL protein.

On Sunday we heard from a naturopath who specializes in co-treatment for cancer patients, an acupuncturist, and a nutritionist. All gave us excellent insights into how we can keep our bodies strong alongside the stresses and scans and procedures that go with managing VHL. Dr. Paul Reilly shared some vitamin suggestions for before and after surgery.

Many thanks to co-chairs Alice Coday and Robin Bennett for their superlative planning and execution, and to each and every presenter and attendee.

[Where handouts are available, there is a highlighted area in the agenda to click].

Conference Agenda

"I enjoyed the conference. As usual it brought together some interesting people and showed some real problems with the health care delivery system.  I am always humbled by the courage and perseverence the VHL Alliance members show." -- Peter Choyke, M.D., National Institutes of Health