Thanks to Retiring Board Members -

Welcome New!

It takes a lot of people-power to make up the VHL Family Alliance. Volunteers give of their time and talents in many ways, mostly at the local level. We welcome your efforts, whatever time you have to give.

We take this opportunity to thank those who have given an extra special amount of their time, in a two or three-year term on the Board of Directors. The Board is the governing group, organizing and producing publications, distributing information by phone, fax, e-mail, and on paper, sustaining communications with the membership and the various chapters and affiliates worldwide, soliciting and evaluating research proposals, and raising and administering the money it takes to do it all. We will be introducing the new Board members to you over the next few issues.

Bill Dickson has done an outstanding job with the Research Committee, building it from the bottom up. He defined procedures for submitting grants, and worked out a cooperative arrangement with Dr. Allan Rubenstein and the National Neurofibromatosis Foundation that we would participate in their research review process, adding two members to their existing Review Board and submitting our proposals for review by the full membership of the Board, a distinguished group of scientists whose interest in NF and genetic disease overlaps about 80% with VHL.

Bill turns over the Research Committee Chairmanship to Myriam Gorospe, a post-doctoral fellow at the Institute on Aging, who has relatives in Spain with VHL. Myriam is our tireless Spanish translator -- she translates our materials into Spanish for her cousins and shares them with us. Thanks to Myriam, our Spanish language site on the Internet is one of the best resources on the net in Spanish for information on genetics and DNA testing, and she gets calls not only for VHL but also for other conditions.

Many of you know Audrey Tobin as the Treasurer who helps register each of the state chapters with their state attorneys general and tax authorities. She and her daughter Kelly Tobin Heselton have built up an excellent set of processes and procedures for managing our money, keeping track of income and expenses and helping the Board forecast our needs. Audrey will continue working with state registrations, but turns the official Treasurer role over to Kelly this year.

Kelly has already been doing a large portion of the Treasurer’s job for the past two years, tracking everything on her trusty personal computer. Kelly is an Information Systems Auditor with Norwest Audit Services, Norwest Bank. We were delighted to have Kelly with us in Bethesda, adding greatly to the conversation and balancing the books for the meeting. Kelly has an aunt and cousin with VHL.

Tom Rodenberg has been our family attorney, sharing his expertise in working with insurance companies with others, answering questions about rights and procedures, and advising the Board on legal issues.

Paula Sicard will assume the chairmanship of the Insurance and Legal Committee. Paula is a bankruptcy attorney in Florida, whose brother has VHL. She is planning some new initiatives. See her article in this issue.

Peggy Marshall and Altheada Johnson were re-elected to the Board. Peggy continues as the Chairman of the Chapters Committee and the Hotline Committee. She has been performing these key roles for us for the past three years, and has built both to a high standard of excellence. She and Don originated and maintain a handbook of information that keeps the hotline volunteers armed with the information they need to assist callers, and provides ideas and procedures for the chapter leaders in the U.S. and Canada.

Altheada Johnson continues as Chairman of the Board and as Chairman of the Membership Committee. She has taken on very seriously the expansion of our membership, finding people with VHL who may or may not already have a diagnosis, especially in the underserved areas of the population. In the past two years she has been a speaker at four conferences, and appeared on the radio. Both Peggy and Altheada participate on the Hotline Committee, answering calls for several weeks at a time.

We are delighted to welcome Don M. to a position on the Board. Don has been the Chairman of the Publications Committee for the past three years, working to make sure we have supplies on hand, and sending materials out to new members. Nearly every member has received a letter from Don. He and Peggy co-chair the Mid-South Chapter, spanning Mississippi, Tennessee, and Arkansas, and have been known to drive to chapter meetings from Florida to North Carolina.

Renée Rosado, who has been serving on the Fund-Raising Committee for the past year, joins the Board and assumes the chairmanship from Lois Erickson. Renée’s late husband had VHL, and she is very close to his family, many of whom have VHL. Her goal is to raise money for research on management and cure of VHL.

Lois has agreed to develop the Professional Education Committee, helping us spread information about VHL throughout the community of medical professionals, and perhaps also to add more information about VHL into medical school curricula. Ideas and contacts will be much appreciated. While Lois is not a medical professional herself, her mission is to make sure that wherever our young people may move in the course of their careers, they will find good medical care for VHL.

Ellen Lydon, Chairman of the Clinical Care Committee, joins the Board. Ellen is a registered nurse in Illinois whose husband has VHL. Ellen will be working with members to determine how the Clinical Care program can best serve their needs, and with the Centers themselves to determine how the program might be improved.

Your suggestions are very welcome in the shaping of the next years’ agenda for each of these committees. The Board are all your representatives. We need to hear from you to help us direct our energies in the ways that will serve you best. Please take the time to share your thoughts and ideas with these people, and perhaps volunteer to help out!

As published in the VHL Family Forum, newsletter of the VHL Family Alliance, June 1997