Sunny Greene

Director, 2005-2010

My introduction to VHL came in 1992. After experiencing ten years of progressively baffling neurological symptoms, my husband Ron was finally diagnosed. He underwent emergency surgery to remove hemangioblastomas in the cerebellum and brain stem in July 1992, soon followed by removal of one kidney. In 2001 his remaining kidney was removed and he went on dialysis. Ron died in October 2002 from VHL complications.

Not long after Ron’s initial surgery my daughter and son were tested for VHL. My daughter Nancy tested negative; my son David tested positive and is being screened regularly. Thanks to VHLFA David was directed to a VHL study at NIH. VHLFA also facilitated DNA testing for David’s three-year-old son, who does not have the altered gene. A second son, as yet untested, is due in June.

Notwithstanding the phenomenal progress made by VHLFA, it is still amazing how relatively few people, physicians included, are aware of VHL and its consequences. Increased communication of what VHLFA is and what we do is vital both to the general public and to our own members. Expanded support to VHL caregivers as well as to patients is needed. Continued dialogue with other genetic disorder groups and research groups is essential. I would like to use my “people skills,” honed by many years in the field of high school guidance, to assist in these areas.

In addition to helping support the VHLFA financially, I would like to participate more actively toward a time when, dare we hope, there might even be a cure for VHL, and when it doesn’t matter if we know what those letters stand for. Ever onward!