One hundred thirty people came together in Kansas City from 20 states in the continental United States, plus four people from Hawaii, two from Germany, and two from Australia. Most were people with VHL and their families; twenty physicians and medical professionals. Some nurses from Kansas City joined us on Sunday, and members of a high school biology class and their teacher came for Ms. Boehm's presentation on genetics. The medical professionals joined together on panels which displayed more than one opinion on the same subject. They engaged in discussion with one another and with the audience to help us understand the many ways of looking at the same information. The families were not looking for simple answers -- we know there are none -- but rather for help in working through the options and engaging in constructive discussions with their own medical teams to work out the optimal health plan for their own unique situations. All the presenters got very strong thank-yous for their willingness to help us do that.A very nice spot was broadcast on NBC News in Kansas City the Friday before the meeting.

Best of all, we met more than one hundred new friends! If you missed this one, perhaps you can join us next year in Boston!

I really enjoyed this -- I learned a lot and it gave me peace of mind." "The mix between affected members, lay staff and medical community was perfect.
-- participant comments from feedback sheets

An Award:

was presented to J. Michael Murray and the Murray Foundation for Eye Research, Inc. for courage and initiative, for creative connections, and for inspiration of innovation in working to conquer von Hippel-Lindau disease.

Teamwork: The ability to direct individual accomplishments toward organizational objectives. . . . The fuel that allows common people to attain uncommon results.
-- Anonymous, submitted by Patti K., California

Professionals Benefitted Too

by Hetty L. DeVroom, R.N., B.S.N., CNRN, Clinical Research Nurse, Surgical Neurology Branch, National Institute of Neurological Disorders and Stroke, Bethesda, Maryland

Just a short note to say how much I enjoyed attending the meeting and presenting our data. I learned about VHL in regards to the kidney and eye first hand from the patient's point of view. Many of the patients told me that they are looking forward to the audio tapes so that they can share the information with their family and friends. I would imagine that the patients and families that could not come will benefit the most. I enjoyed sharing my nursing and medical knowledge with those sitting around me. From my point of view, every nurse, and possibly a few physicians, can benefit from a patient's point of view in a setting outside of the hospital or office. You can be very proud of the way the meeting was managed and the turnout of the attendance.

Spreading the Word

by Melissa M., Delaware

This was an extraordinary event. We have lived with VHL in our family since the 1960's. Nonetheless, in two days we learned more about VHL than we had ever known. Not only did we learn from the doctors, but we learned as much from the other VHL patients and family members and their experiences. We learned most of all that you can live with VHL and it does not have to be tragic. You can live a long and happy life as long as you are monitored and treated early.It is very important to make people and physicians aware of the disease because it is so under-diagnosed. We need to be more aware of VHL so that the correct diagnoses can be made and treated early. VHL can be controlled with proper monitoring and treatment. VHL is not as rare as we were led to believe. VHL patients want to be as informed as possible and we want our doctors to be as informed if not more informed as we are. Part of the problem is that very few doctors know much about VHL or associate it with the problems their patients may be having, causing it to be missed over overlooked in diagnoses.

I am writing to my local papers, television stations, and some national programs too. I am working to do what I can to improve diagnosis, treatment, and quality of life for people with VHL.

Miracles

by Don and Peggy M., Miss.

We have attended too many meetings where we have had to search for a positive learning experience. But this conference was different. It met every expectation we had and is rated as the best we have ever attended. We wish to thank Cindy Dearing, Lois Erickson, Joyce Graff, the University of Kansas Medical Center, and all associated with the Conference. There is no doubt in our minds that the "TEAMWORK" in evidence will achieve our goal of making VHL as manageable as diabetes in five years.If we were to find one aspect of this meeting that stands out foremost in our minds, it would be the caring and sharing that permeated the entire meeting. We are not alone, but are part of a large caring and sharing family. Although each person has their own story, we all share a common bond. It was apparent that we all have the same goals, albeit expressed in many different ways. We personally saw new friendships begin, not only between families living in close proximity but nationally and internationally. This Conference brought the highest meaning to a "Family Alliance." The interpersonal relationships established will last a lifetime.

It was readily apparent that much thought was put into inviting knowledgeable speakers and coordinating sessions with the goal of teamwork between patient and provider. Each session was well prepared and orchestrated to address specific needs.

The Conference was a "Miracle" in the creation of a family of Sharing, Caring, and Education. Our love and thanks to everyone who is a part of the VHL Family Alliance.

As published in the VHL Family Forum, June 1994, 2:2