From Volunteer to Patient: Saville’s Story

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When successful entrepreneur Saville Kellner was asked to support the Cool Comedy – Hot Cuisine scleroderma fundraiser in Los Angeles, he enthusiastically agreed, donating generously and attending the event as well. The jovial South African continued to support CCHC events for several years.

Despite his familiarity with the disease, when Saville began experiencing strange symptoms, he wrote it off as part of getting older. His hands would randomly turn blue and then white, and lost flexibility; he began to feel out of breath more easily than usual, and he had difficulty swallowing. After a series of exams and tests, he was diagnosed with systemic scleroderma. Stunned, he called his friend Susan Feniger, celebrity chef and Scleroderma Research Fund board member. She referred him to specialists at Johns-Hopkins University, who designed a treatment plan.

Determined to conquer the disease, Saville threw himself into the fight, joining the SRF board of directors and bringing new CCHC events to his adopted hometown of Las Vegas. The disease has slowed his usual driven pace – but only slightly. Susan says, “He’s passionate, focused, a catalyst for improving the lives of patients…I’m grateful that we are in this fight together.”

Saville himself likens his scleroderma diagnosis to winning the lottery. “The odds of people flying to the moon on their own wings are far greater than the chances that a supporter of the SRF would develop scleroderma…but everybody loves a lottery winner, and that’s how I see myself. I won the lottery to become a face of scleroderma.”