Terry W. met with the University of South Carolina genetic counselors’ progam in March. It’s a post graduate program. "I get an hour of their class time to talk about VHL and show the VHL video. The students are seniors in the program, and are from all over the US. Recently one young lady was from as far away as Washington State. She had graduated from Washington State University, and another was from Michigan, where she had attended the University of Michigan. I’ve done this for 6 or 7 years. In the beginning I didn’t have the video. It has been a nice help." The VHL video is available from the office, 617-277-5667.

The California state meeting was held in Sacramento in April. Dawn Cerf reports, "Dr. Ralph de Vere White, the Director of the U.C. Davis Cancer Center, discussed his work on VHL, and we were able to ask lots of questions. As a side note, one of his specialties is prostate cancer. His research has revealed that the much higher incidence of prostate cancer among the African American population is correlated with their high dietary intake of BBQ meat. That’s something to think about. We noticed that no one ate BBQ at lunch.

"After our speaker left, the group talked for hours. We had so much to say to each other. One of the attendees had been officially diagnosed with VHL only days before the meeting. Needless to say, he was delighted to meet everyone and receive lots of good information. We didn’t want to overwhelm him, but he wanted to soak it all in. Best of all, our conversations were sprinkled with lots of humor and laughter. We were able to discuss a serious topic and enjoy ourselves at the same time. There was a deeper level of bonding going on that happened because our meeting was smaller than usual."

A few members met in Phoenix, Arizona, with Peggy and Don Marshall during their vacation there in May, celebrating their 42nd wedding anniversary. Happy Anniversary to Don and Peggy!

A few members met in Augusta, Maine, with Joyce Graff, following the American Cancer Society Living with Cancer Conference in May at the Augusta Civic Center.

*3 Generations of women with VHL in Rhode Island*

A group of Rhode Islanders met for a delightful dinner with Joyce on May 21 at a restaurant in Providence. In particular we had two very animated women with similar brain tumor histories, very engaged in sharing stories and local resources and strategies for caring for their health. We also had one family with three generations of women with VHL — ages 31, 51, and 72 — all eating and joking with us at the table, which was very inspiring to the young newly-married couple.

The Massachusetts chapter held a fundraiser in conjunction with Fajita’s & ‘Rita’s Restaurants in May 2003. We invited our supporters to have dinner, and Fajita’s & ‘Rita’s donated 20% of the dinner check to VHLFA!

*Amy and Steve*

The New York chapter is meeting June 1 and will report their activities in the next newsletter.

Chile now has eight family groups with VHL, including a new one identified in April. The medical community is becoming more aware of VHL, and the Catholic University in Santiago is developing a coordinated center for clinical care. Chairman Pierre Jacomet is being interviewed June 3 on television with a live audience of 500 people. He is a well-known writer and philosopher in Chile, and he will use ten minutes to talk about VHL.

As printed in the VHL Family Forum 11:2, June 2003. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.