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Alliance News, June 1993
The Board approved the By-Laws, Chapter Agreement, and Chapter By-Laws in April. Incorporation documents and application for 501(c)(3) tax exempt status have been filed.
Officers. We are pleased to present this first set of six officers to you, listed below. They are a talented, energetic, and compassionate group of people. These six people have 135 years of experience living with VHL. Just in their own nuclear families, not counting other assorted relatives, they represent 18 people with VHL.
Nonetheless, we are all still learning as we go along. What we have learned from each other in the last few months has been, in the words of my nephew, "Awesome!"
The first set of officers will serve through next year's Annual Membership Meeting, when we will elect officers under the terms of the By-Laws. We hope you will plan to join us for the Annual Meeting next spring. Details will be announced in the September issue. Save up those Frequent Flyer miles!
Our Medical Advisory Board, listed below, consists of physicians and other medical professionals with depth and breadth of experience with the various aspects of VHL. We are honored to have such an outstanding group of people who have graciously donated a portion of their very valuable time to assist us all in understanding and dealing with VHL.
Chapters are forming in ten states. Many are planning to hold meetings beginning in June. Please call us for the time and location of a meeting near you, or to set up a meeting in your own area.
In Britain, Hazel Murfitt and her daughter Anne have been very busy with speaking engagements and appearances in the media. At the forthcoming Bike-a-thon for cancer, sponsored by Action Research, Susan Tulley, a star of East Enders, will be riding for benefit of cancer and VHL! A portion of the proceeds of the event will go to support Dr. Maher's research on the VHL gene.
You can help publicize VHL in your own community. We will be happy to provide information and assistance. If each of us does a little in our own communities, we will make an enormous difference.
We have been contributing brochures to a number of professional events around the country, spreading the word about VHL to medical professionals. Copies of these brochures are available for the asking. If you hear of an event, or want some for a physician's waiting room, please ask for copies of "What is VHL?" or "VHL -- not so rare after all". We would appreciate feedback on these, and your ideas for additional brochures.
We have a new 800 number -- 1-800-767-4VHL in the U.S. and Canada. This number will go to one of the Board members on a rotating basis. You are also welcome to dial any one of us directly. Please don't be shy to leave a message if we're not available just when you call -- we really want to speak with you!
Many thanks to all the Members and physicians who have helped to distribute copies of our brochures and of these first two newsletters. Please spread them around!
Special thanks to all the Members who contributed ideas, questions, and articles for this issue.
Now it's your turn!
What do you want to learn? What would you like to hear? What questions would you like answered?
Please share your thoughts and concerns with us, in any form. We read a variety of languages, including Braille. Send us a poem, a cartoon, a random thought. One Member sent in "Having VHL sucks." We can relate to that too.
We need to hear from you!
Thank you all. We hope you and your loved ones are well. -- Joyce, Peggy, Susan, Hazel, Lois, and Darlene
Directors, June 1993:
Medical Advisory Board, June 1993
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