First-time philanthropy: When crisis prompts a family to start a foundation Wednesday, June 30, 2010
Events, Health, Kidsburgh
In the spring of 1998, just days after Remi Sophia Savioz was born, she began suffering from uncontrollable seizures. Hospital visits, more seizures, high fevers, tremors, dystonia, hypotonia and low muscle tone followed. Eventually, Remi became one of only about 200 people worldwide who are diagnosed with a disease called Glucose Transporter 1, which affects the amount of glucose that reaches the brain. Her mother, Samra Savioz, began investigating the disease and found that because it is so rare, little research has been done to discover a cure or even develop effective strategies for managing the illness. "From my perspective, there were two choices,." Savioz says, looking back on those early years. "One was not to do anything. And the other was to do something. And doing something was going to have to mean something big. When I looked around, there were no other organizations or foundations or government resources."
Determined to change that, Savioz started a search that led her to the University of Texas, where one doctor had begun exploring the illness. He explained that without considerable funding -- as much as $1.5 million -- clinical trials and extensive research couldn't be done. So Savioz, with a background in science but no career experience in philanthropy, started a foundation in her daughter's name.
It has been exhausting. But when people say that one woman starting an entire foundation while caring for a disabled child seems insurmountable, Savoiz points out that doctors once said Remi wouldn't walk. Now she can. They said she wouldn't talk. Now she can. The seizures that once defined her days are now controlled by a complicated diet. Remi is even working on learning to read. With enough effort, even the insurmountable can be accomplished. After several years of research, paperwork and long hours of learning and planning, the inaugural event for The Remi Savoiz Glut-1 Foundation is scheduled for July 24 in North Park (details here). This bike tour and carnival will be both a fundraiser and a celebration: Remi has often commented to her mom that she wishes she could someday have "a birthday party like a regular kid." This event will be that party.
Savioz understands that even fast breakthroughs in Glut-1 research won't have much impact on Remi's daily life. But her goal is to make sure her daughter's condition is better understood, and ensure that Remi can be cared for properly as she grows. "She'll have a community after I'm gone," Savoiz says.
Savoiz's energy is palpable, and she brings a remarkable combination of determination and humor to this huge task. And she has little interest in praise for her work. "For either of my children there's nothing I wouldn't do," she says. "Compared to Remi's struggle every day, this pales in comparison."
Writer: Melissa Rayworth
Source: Samra Savoiz, Remi Savoiz Glut-1 Foundation
Image courtesy of Remi Savoiz Glut-1 Foundation
