VHL Family Alliance would not exist without our many dedicated volunteers. Our volunteers are the heart of what we do. Their skills, dedication, motivation and energy are what makes the VHL Family Alliance vibrant and present throughout the world. It is with great pleasure that we honor our Volunteers of the Year 2006: Tom Rodenberg, Evelyn Werner, Chris Hendrickx, and Susi Martínez.

Tom Rodenberg has been with us since 1994, chairing the Insurance and Legal Committee. He served as a Director of VHLFA 1994-97. He rejoined the Board in 2000-06, and served as Chairman of the Board 2004-2006.

After Tom graduated from law school in 1989 he used his training to practice in the areas of employment discrimination, civil rights, personal injury, civil litigation and insurance claims. Since 2004 he has been the General Counsel of his local school district.

We honor Tom for his nine years of service on the Board, and especially for his gentle strength and wise counsel as Chairman.

Evelyn Werner is about as dedicated as they come. Evelyn and her husband Bob have attended nearly every VHLFA meeting since 1994! Evelyn, who has VHL, is one of the kind voices you will reach on the other end when you call our hotline. Evelyn says she is “thrilled” to be able to be on the hotline to help and get to know people from all over the United States and Canada. When people call they often have little or no information on VHL. Evelyn provides information and support to them, lending a warm listening ear. She does this work in memory of the two sons she lost to VHL. Evelyn has been with us for over a decade and we look forward to continuing to work with her in the years to come.

Chris Hendrickx chairs our affiliate in Belgium, which she founded in 1994. She has done a great deal to support others with VHL in Belgium, and to raise the visibility of VHL in Belgium, working with doctors in the Flemish-speaking sector of the country. French-speaking doctors are served out of France. Chris is fluent in English, Flemish, Dutch, German and French. She attends the Dutch and German meetings, participates in the German and English online support groups, and helps to keep these groups in communication with one another. She is translating the Handbook into Flemish. We honor Chris for her hard work and dedication, and for the many people she has helped to find hope and service in Belgium.

Jesusa “Susi” Martínez-Gomez is President of our affiliate group in Spain, Alianza Española de Familias de von Hippel-Lindau. She provides telephone support in Spain, and via e-mail supports others with VHL in Spain and Spanish-speaking countries throughout the world.

One of her colleagues wrote, “What I admire most about Susi is her warmth, endless optimism…diplomacy and persistence, she achieves all that she sets out to do!” She has applied these qualities in building the support organization in Spain, including a beautiful website and regional meetings. She has inspired many people to participate in Alianza Española de Familias de von Hippel-Lindau, even physicians in hospitals that are far away. She manages all of this despite her decreasing vision. She continues to hope that there will one day be a cure for VHL.

“Sometimes,” said Dr. Karina Villar, “I think that this disease is a blessing in that it brings out the best in the people that it touches”. We celebrate the courage and kindness of these four outstanding volunteers, who are excellent examples of the many volunteers who make up this Alliance.

As printed in the VHL Family Forum 14:3, November 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org