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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
- To promote research on von Hippel-Lindau.
We are pleased to submit this sixth Annual Report and look forward to continued growth of what is now a strong worldwide organization.
Distributing Information
Collection and distribution of information about VHL remains our most important activity. We gather information about VHL from families, from physicians, and from researchers.
The Handbook was published in Dutch by Dr. F. J. Hes, and in Japanese by Dr. Taro Shuin. We are pleased at the vote of confidence expressed in this document, and are delighted to see it available in more languages.
Dr. Shuin has created an internet web service in Japanese. On the home page of our web site are pointers to this and other affiliates’ websites in French, German, Spanish, Dutch, Flemish (Belgium), and Japanese.
We have published twenty-two issues of our quarterly newsletter, the VHL Family Forum, which has become a well respected forum for sharing ideas among families and physicians.
During the past twelve months over 1600 information packets have been distributed to patients and physicians throughout the world. Requests for information are coming in through the 800 line and the internet, resulting in the addition of 1513 VHL affected members.
Our World Wide Web service, inaugurated in April 1995, continues to be hosted as a charitable service of Kivex, Inc., of Bethesda, Maryland. This site has won several qualitative awards this year, including NORD and HealthOnNet. We are careful to present only carefully reviewed information. Our web site contains basic information about VHL, posts articles from the newsletter in online form, and connects people with local chapters and clinical care centers around the world.
This service has continues to be our leading connection with the world. Requests come from people both with and without diagnoses of VHL, from countries throughout the world. Services and articles are available in English, Spanish, French, German, Italian, Dutch, Flemish, and Japanese.
We are easily found through various search engines on the Web, through keywords including the various aspects of VHL, so that people looking for pheochromocytoma, for example, will find their way to us. Our 800 number and internet support staff frequently receive calls seeking information about related conditions, and are able to refer them to other support groups or medical professionals to assist them. A number of patients and physicians have in this way discovered VHL as a possible diagnosis, and later confirmed that their condition was in fact VHL. We are pleased to have helped contribute to an early diagnosis for these people.
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. We are grateful to the volunteer members of the 800 and Online Committees who are our first contacts with the world. Our Guestbook online allows people to post notices looking for pen pals or other kindred spirits.
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, chaired by Peggy M.: Lois Erickson, Altheada Johnson, Eva Logan, Barbara Redding. Altheada Johnson and Bob Lydon staff our Internet account, info@vhl.org.
Don and Peggy M. prepared and continue to maintain an excellent Resource Guide for these two Committees, to ensure that they have the best current information at hand when people call. These materials are also used as a base for chapter chairpersons, and for local affiliate groups in other countries.
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.
Conferences
The Fifth Annual Patient/Provider Conference was held in June 1998 in Bellevue, Washington, chaired by Robin Bennett, M.S., genetic counselor at the University of Washington, and Alice Coday, who also chairs the Washington state chapter of VHLFA. 80 people attended, most from the west and northwest, a quadrant of the country where we have not previously had a great deal of activity. We felt that we made numerous very good contacts that will help us to grow in these areas. Feedback from all the attendees was very enthusiastic.
In addition, the Third Biennial Symposium on VHL took place in Paris,
chaired by Dr. Stéphane Richard and hosted by Necker Hospital at
the Sénat in the Luxembourg Palace. 150 physicians and researchers
attended the meeting, 30 family members from France attended the Friday
session, and ten family members from international affiliates attended.
For the first time, awards were presented to physicians for their contributions toward improving clinical care for people with VHL throughout the world:
Dr. Eamonn Maher from Britain
Dr. Hans Ulrik Müller from Denmark
Dr. Stéphane Richard from France
Dr. Hartmut Neumann from Germany
Dr. David Gross from Israel
Dr. Giuseppe Opocher from Italy
Dr. Taro Shuin from Japan
Dr. Kees Lips from the Netherlands
Dr. Karol Krzystolik from Poland
In the U.S., the team at the National Cancer Institute under Drs. Zbar and Linehan
Reports from both meetings appeared in the Newsletter and on the internet, with complete sets of abstracts posted on the internet.
A patient/provider meeting is scheduled for June 1999 in Atlanta, co-sponsored by Emory University and chaired by Dr. Louis Elsas and Eva Logan of VHLFA. The Fourth Biennial Symposium on VHL, combined with the Annual Meeting, will be held in Rochester, Minnesota, in June 2000, co-sponsored by the Mayo Clinic and chaired by Dr. Virginia Michels and Kelly Heselton of VHLFA. We look forward to Padua in 2002.
Research
The Tissue Bank continues to be a strong and growing resource for families and researchers. We are grateful to the University of Maryland for its inclusion of VHL in its Tissue Bank for Development Disorders. The Tissue Bank is available 24 hours a day to receive contributions from people having surgery, or in case of death. Having a bank of available tissue serves as an encouragement to additional research teams to undertake projects on VHL.
Our Research Advisory Committee approved two grants for funding this year. Through the generosity of the membership, and especially because of a large grant from the Rasmussen family, we were able to provide $40,000 to each recipient. Both are working toward understanding in greater detail the role that the VHL protein plays in the body, and how alternative drugs might be used to emulate or replace that function to keep tumors from forming or to inhibit or reverse their growth.
- Dr. James Gnarra, Louisiana State University, "VHL Control of VEGF Expression and Angiogenesis."
- Dr. Robert D. Burk, Albert Einstein School of Medicine, "Studies on the VHLp18(MEA) protein."
Both these physicians have already done impressive work on the VHL gene, and these projects build upon the strong foundations they have laid down.
Membership
When we started out in January 1993 we were in touch with six families, and redistributed 200 newsletters through physicians, for a total reach of only 218 affected people. By July 1994 we were reaching 2950 people in 20 countries. In September 1998 we were reaching 7555 people in 46 countries, an increase of 12.1% over the previous year.
Figure 1: Population served.
Left bar = Professionals, Right bar = people with VHL
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 in every country worldwide.
The French group grew significantly this year. The introduction of the Japanese website had generated increased interest in Japan. Dr. Opocher’s practice in Padua, Italy, has significantly improved clinical care in Italy.
Through the Internet, we are able to reach and serve a number of people scattered in various countries. This year saw a significant increase in Spanish-language requests from Spain, Mexico, and Central and South America. Our web statistics have been climbing steadily. In June alone we were contacted nearly 1000 times a day, 6500 requests a week from 650 people, approximately twice the "hit rate" in the previous year.
Chapters
The Chapters Committee continues to grow with strength to 27 local chapters available in the United States.
We also have official affiliate groups in England, Australia, Canada, Denmark, France, Ireland, Italy, Poland, Holland, and New Zealand, and contact people in Chile, Germany, Belgium, Israel, Switzerland, Hungary, Norway, Nepal, Malaysia and Japan. Non-U.S. groups are self-supporting financially. They 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 likelihood of an early diagnosis.
Our thanks to Peggy and Don M. who head the Chapters Committee in the U.S., and to the heads of each of our international affiliates who make local services available in those countries.
Particular thanks go this year to VHL France, where president Mireille Proux and her husband Michel have grown a strong organization with regional contact persons in all the regions of France, with a presence on the French Minitel, and strong membership in Operation Nez Rouge, a combined health organizations campaign. Mireille also co-chaired the Paris Symposium in September 1998.
Clinical Care Centers
The Clinical Care Centers program is working to improve the strength of the "chain of information" represented by this program.
Ellen Lydon, R.N., chairs this program. We currently 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. While some centers have greater expertise than others in VHL, no single center has seen every aspect of VHL. All centers need the ability to easily find physicians who have seen a particular problem before and can offer some perspective and advice on the issue.
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 likelihood of an early diagnosis.
Kathy B., chairing Professional Education, will focus this year on additional ways of making information about VHL available to physicians and other health care personnel, and to add information about VHL into existing curricula and online resources.
Beginner’s Guide
This year we added a focused effort to meet the needs of people newly diagnosed with VHL. We created a "beginner’s guide" to VHL on the internet, and "Frequently Asked Questions". These materials have been well received, and we will be producing them in print as well in fiscal 1999.
We tried some outreach to young people through a Teen Page, and offered special teleconferences for teen concerns, hosted by Peggy M.. Very few teens attended, though those who did attend were pleased with the sessions. Feedback from the teens we canvassed is that for the most part their concerns are being met by their parents, the social workers at the school and hospital, and the printed materials. There were some comments that some materials were difficult to understand, but the Beginner’s Guide and Frequently Asked Questions seemed to fill this need.
Medical Advisory Board
The members of our Medical Advisory Board continue to play 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
This year’s operating expenses of $61,620 were up only 28% over fiscal 1997.
We are all volunteers. We pay no staff; we do not rent office space. The money we raise goes directly into programming and research. We are able to do this because of the hard work of a large number of dedicated volunteers in twelve countries around the world. Volunteers provide telephone and internet inquiry service, maintain our web site at www.vhl.org, and provide outreach in local areas.
FY98, Ended June 30, 1998
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| INCOME: |
|
| Contributions |
$143,179 |
| Conference & sales income |
$11,835 |
| Membership dues |
$4,252 |
| Interest & dividends |
$1,464 |
TOTAL INCOME |
$160,730 |
| |
|
| EXPENSES: |
|
| Administration |
$4,186 |
| Capital Expense |
$3,018 |
| Goods Sold |
$5,380 |
| Conference Expenses |
$11,065 |
| Fundraising |
$1,150 |
| Fees |
$672 |
| Hotline |
$4,670 |
| Newsletter |
$15,605 |
| Online |
$3,257 |
| Publications |
$12,233 |
| Public Relations |
$349 |
| Research |
$87,573 |
| Tax |
$35 |
TOTAL EXPENSES: |
$149,193 |
Conferences are intended to be self-funding, but they generally do cost us a modest amount each year. Conferences serve to get people together, and raise real patient issues in an organized way with physicians and researchers, so that they are understood to be more than unique to a single patient. They also provide a forum for members of the medical community to share ideas and work toward consensus on medical management. They are not only beneficial to the people who attend, they expand our knowledge of VHL for everyone. Numerous researchers have told us they find our meetings very inspiring – after meeting real people with VHL, they return to their labs with greatly increased eagerness to succeed in their work.
The Seattle meeting expenses came to $11,065 less income of $9,049, for a net cost of $2,016. Paris meeting income and expenses were tallied in France by Dr. Richard, and have no net cost to the VHL Family Alliance.
Business Plan, Fiscal 1999
Our operating budget for the coming year is $60,000, and our goal for research funding is another $40,000. We will be doing more electronic publishing, looking to convert some of the paper publishing to electronic in the course of the year.
Our existing programs will be continued into the coming year. We are proposing to initiate some more interactive services: teleconferences and online chats on specific topics.
Jay Platt, a Marine from North Carolina, is proposing to walk the Appalachian Trail beginning in August. Jay will lead our fundraising effort for fiscal 1999.
We need your help! We are already making a difference, bringing closer the day when there will be better medical management for VHL. Please help us continue this important work.
Budget, Fiscal 1999
| Telephone |
$7,000 |
| Repairs |
$500 |
| InfoBase |
$3,000 |
| Supplies |
$3,000 |
| Conferences |
$2,000 |
| Hotline |
$5,000 |
| Newsletter |
$15,000 |
| Postage |
$9,000 |
| Public Relations |
$1,500 |
| Publishing |
$13,000 |
| Grants |
$40,000 |
| Fees |
$1,000 |
| TOTAL |
$100,000 |
Special Projects in Need of Funding:
- Interactive services (teleconferences and chats) at $500 to $1000 per event
- The VHL Registry will promote research by providing researchers with easier access to summary information about aspects of VHL. $5,000-$10,000 per year for data entry and analysis by qualified researcher.
- 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 $20,000 each will spur research on VHL management
Other project proposals on request.
VHL Family Alliance
2001 Beacon St, Suite 208, Boston, MA 02135-7787 USA
+1 617 277-5667;
Fax: +1 858-712-8712;
Patient support: +1 800 767-4VHL
info@vhl.org or http://www.vhl.org
All persons listed are volunteers who receive no compensation for their services to the Alliance.
Board of Directors
- Kathleen Braden, Professional Education Committee. Functional Outcomes Coordinator, St. Francis Hospital, Indianapolis, Indiana
- Dr. Myriam Gorospe, Research Committee, National Institute on Aging, Baltimore, Maryland
- Joyce Wilcox Graff, Co-Chair, and Editor, VHL Family Forum, Research Director, Intranets & Electronic Workplace, Gartner Group, Brookline, Massachusetts
- Kelly Heselton, systems auditor, NorWest Bank, Faribault, Minnesota
- Altheada Johnson, Membership Committee, Chairman of the Board, retired dietitian, Brooklyn, New York
- Ellen Lydon, R.N., Vice Chair, Clinical Care Committee, nurse, Chicago, Illinois
- Peggy Marshall, Chapters, child care business, Corinth, Mississippi
- Sheldon C. Marshall, Jr., Publications, computer instructor, Corinth, Mississippi
- Susan McGuire, Public Relations Committee. Office Administrator, Raleigh, North Carolina
- Melissa Minster, Secretary of the Board, designer and jeweler, Newark, Delaware
- Terrence R. Redding, President/CEO, Online Training, Inc., Palm Beach, Florida
- Renée Rosado, Fund-Raising Committee, customer support, Peoplesoft
Corporation, Morage, California
- Paula Sicard, Esq., Legal and Insurance Committee, Attorney, Tampa, Florida
- Pastor David Torres, Dialysis & Transplant Support, minister, Hanapepe Missionary Baptist Church, Kauai, Hawaii
Medical Advisory Board
- Lloyd M. Aiello, M.D., Chief, Beetham Eye Institute, Joslin Diabetes Center, Boston, Massachusetts
- Debra L. Collins, M.S., Division of Genetics, University of Kansas Med Center, Kansas City, Kansas
- Col. James M. Lamiell, M.D., Chief, Clinical Investigation Regulatory Office, U.S. Army Medical Center and School, Fort Sam Houston, Texas
- John A. Libertino, M.D., Chair, Institute of Urology, Lahey-Hitchcock Clinic, Burlington, Massachusetts
- Eamonn R. Maher, M.D., Genetics, Birmingham Women's Hospital, England
- Virginia V. Michels, M.D., Chair, Department of Medical Genetics, Mayo Clinic, Rochester, Minnesota
- Haring J. W. Nauta, M.D., Ph.D., Chief of Neurosurgery, University of Texas Medical Branch, Galveston, Texas
- Hartmut P. H. Neumann, M.D., Department of Nephrology, Albert-Ludwigs University, Freiburg, Germany
- Edward H. Oldfield, M.D., Chief, Surgical Neurology Branch, National Institute of Neurological Disorders & Stroke, Bethesda, Maryland
- Allan E. Rubenstein, M.D., Director, Neurofibromatosis Research & Treatment Center, Mount Sinai Hospital, New York
- R. Neil Schimke, M.D., Dir. of Endocrinology, Metabolism & Genetics, University of Kansas Med Center, Kansas City, Kansas
- Robert B. Welch, M.D., Chairman Emeritus, Department of Ophthalmology, Greater Baltimore Med Center, Baltimore, Maryland
International Affiliates
Contact people are available in additional countries;
call for a referral
see current listing
- AUSTRALIA:
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Jennifer Kingston
Australia
- BELGIUM:
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Ms. Chris Hendrickx
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Belgium
- CANADA:
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Paul Bonneau
Canada
- DENMARK:
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Richard & Vibeke Harbud
Denmark
- ENGLAND, U.K.:
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Mark & Michelle East
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England, U.K.
- FRANCE:
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Mme Mireille Proux, Presidente
VHL France
France
- GERMANY:
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Mr. & Mrs. Peter Zeitzmann
Germany
- ITALY:
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M. Luisa Guerra
Italy
- THE NETHERLANDS:
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Jeannette Bos-Mol
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The Netherlands
- NEW ZEALAND:
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Jon & Valerie Johnson
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New Zealand
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