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Von Hippel-Lindau (VHL) Family Alliance Annual Report, 1994-95

The VHL Family Alliance was founded in early 1993 with the following purposes stated in its Articles of Organization:

• To disseminate timely and accurate information about von Hippel-Lindau (VHL) to patients, family members, physicians, and others
• To provide means for patients and relatives to share experiences, support one another, and improve their medical care
• To encourage, advise, and establish standards for clinics specializing in the diagnosis and treatment of von Hippel-Lindau
• To aid and encourage formation of Chapters and to provide assistance and guidance to enhance their effectiveness

We are pleased with the progress we have made in our first two and a half years of operation, and excited at the prospects for the coming fiscal year.

Distributing Information

We have distributed more than 5,000 copies of the VHL Handbook: What You Need To Know About VHL, now in its fourth printing. It is available on audio tape and in print, in English, Spanish, French, Italian, and Dutch. An update to the Handbook is currently in progress, to be published in 1996. Funding for the printing of the Second Edition is currently being sought.

We have published ten issues of our quarterly newsletter, the VHL Family Forum, which has become a well respected forum for sharing ideas among families and physicians.

Our Computer Bulletin Board opened in December 1994, and has been building slowly. It began as a stand-alone service with its own dial-in number, and is now connected to our Web Home Page through a live link. This service is donated by the United Methodist Church.

Our new World Wide Web service, inaugurated in April 1995, contains basic information about VHL, and posts articles from the newsletter in online form. We are grateful to the Neurogenetics Department of the Massachusetts General Hospital for hosting our Web service, to the Genetics Department of the University of Kansas Medical Center for including us on their home page for genetic counselors, and to OncoLink, a service of the University of Pennsylvania, for linking our home page under their listings for kidney cancer.

Special thanks go to Dr. Stephen Tatter of Mass. General Hospital for being our very capable WebMaster, and to Fred Johnson of the United Methodist Church for coordinating our VHL Bulletin Board.

Sharing and Family Support

There are two primary ways that people can make a personal contact and ask their own questions: telephone and e-mail.

Our toll-free family support hotline continues to be one of our premier services. 1-800-767-4VHL always reaches a VHL family, one of five members of the 800 Committee: Lois Erickson, Altheada Johnson, Eva Logan, Peggy M., Barbara Redding, chaired by Peggy M..

Fred Johnson chairs the Online Committee, one of several people who share the staffing of our Internet account, info@vhl.org. Damon G., Vernon Hunsberger, Fred and Altheada Johnson, and Bob Werner have shared attending this account.

Peggy and Don M. prepared an excellent Resource Guide for these two Committees, to ensure that they have the best current information at hand when people call.

People call with a broad range of questions and concerns. For most people, their call is the first time they have spoken with another person with VHL outside their own families.

Conference

Our Patient/Provider Conference in Boston was a wonderful event, echoing the success of the Kansas City meeting in 1994. 120 patients and family members and medical professionals gathered in Boston for two days to focus on VHL and share ideas for making it more manageable. People with VHL shared their stories, and had an opportunity to learn about diagnostic and treatment options. Medical professionals had an opportunity to hear people's stories in a very different way than they are usually told in a medical setting. Feedback from all the attendees was very enthusiastic.

Research

In the course of the year we participated with researchers on projects to learn about and improve treatment planning for stereotactic radiosurgery, diagnosis and treatment of a tumor which causes hearing deficits, and the effectiveness of angiogenesis inhibitors in the treatment of VHL.

We launched the Research Management Committee and began looking for small affordable research projects which we might be able to fund, providing seed money to spur research efforts on VHL, and learn more about the care and management of VHL. We are looking for factors which can slow down tumor growth or otherwise soften the course of the disease.

At the end of this fiscal year, we have identified an exciting project for which we will launch a fund-raising effort targeted at creating a research fund.

We have completed a feasibility study on the establishment of a VHL Registry, which now awaits funding. We have established that this would be very useful to members of the research community, and that we can share resources with other rare diseases to keep expenses manageable.

Membership

In January 1993 we were in touch with six families, and redistributed 200 newsletters through physicians, for a total reach of 218 people. By July 1994 we are reaching 2950 people in 20 countries. In July 1995 we are reaching in 23 countries.

We are always looking for new ways to find more affected families, or people whose set of symptoms might be VHL. VHL affects every ethnic group. This year the Altheada Johnson of the Membership Committee has done special outreach to minority groups, through clinics and media for minorities in New York, Florida, California, and Texas. Our thanks to Myriam Gorospe and Aboubakry Guiro for their efforts in translating materials into Spanish and French.

Chapters

1995 was a banner year in the formation of new VHL Family Alliance Chapters. Nine chapters were formed bringing the total to 21 State Chapters covering 28 states, and eight additional state contact people. More than 15 State Chapter meetings were held across the nation. Several chapters completed mailings to medical professionals in their area, educating them about VHL.

We also have official affiliate groups in England, Australia, France and Italy, and contact people in Germany, Israel, Switzerland, Holland, Denmark, and Hungary. Non-U.S. groups are self-supporting financially, but add enormously to our knowledge about VHL and its management.

This network of local people is a critical component in providing people with the friendly contact they need in times of worry. It's not just a local phone call, it's also some guidance on services in the local area, perhaps in local language. The local public relations and outreach work of the chapter locates additional physicians and affected families in that area, and increases the liklihood of an early diagnosis. In each state where there is a chapter we have gained an average of 10 new members this year.

Public Information

Seven additional articles from members of the Alliance were published this year in newspapers around the country, telling the general public about von Hippel-Lindau. Three television news Baltimore, Boston, and Charlotte, North Carolina, and radio interviews in Florida and France. Notices about VHL Family Alliance activities appeared in numerous professional periodicals such as Exceptional Parent, and in Coping Magazine. We were also cited in medical journals in the U.S., Australia and Germany. Each of these brought new members and inquiries -- both families and physicians.

Clinical Care Centers

In June 1994 we announced the inauguration of our Clinical Care Centers program. During this first year chairman Susan Warnick, R.N., and her committee prepared guidelines for existing and new centers. We how have 23 participating centers in eight countries. These institutions have agreed to help patients obtain complete screening across all the necessary medical specialties, and to ensure communication and coordination of their care among members of the medical team.

This program is providing us with centers to which we can refer people with VHL for primary care or second opinions. It is also serving to raise the visibility of VHL in the medical community and increase the liklihood of an early diagnosis.

Medical Advisory Board

Throughout the year the members of our Medical Advisory Board have played a key role in nearly everything we do. They ensure that we produce quality materials, provide advice and guidance for the Board, and for members as needed, and most important, provide a chain of quality information for physicians seeking help with patients with VHL throughout the world. All of us are grateful for their advice and participation.

Financial Report

The VHL Family Alliance is staffed entirely with volunteers. Our modest expenses are funded by membership dues (11%), grants (16%), and donations (73%).

The Patient/Provider Conference "broke even," which was its goal. Expenses of the Patient/Provider Conference were paid by the attendees (70%), grants (5%), and donations (25%).

The Board voted to keep the dues for fiscal 1996 at $25 per address for families, and $35 for professionals. For many families, heavy medical bills and lack of access to insurance make even our modest dues difficult. No one is denied access to information or membership. The donations of friends, interested medical professionals, and corporations are essential in completing the budget.

1. Four fax machines for Board, PC for Clinical Care Center program. Funded by a grant from the Murray Foundation.

Special Projects in Need of Funding:

• The VHL Registry will promote research by providing researchers with easier access to summary information about aspects of VHL.
• Scholarships of $100 each and Sponsorships of $1000 or more will enable more VHL patients and family members to attend the conference and learn to manage their health
• Research Grants of at least $10,000 each will spur research on VHL management

Other project proposals on request.

Further information is available from the VHL Family Alliance, info@vhl.org.