North Hills resident Samra Savioz is raising awareness and research funds for Glut 1, a rare disease that afflicts her 11-year-old daughter, Remi.
By Meredith Reffner
Eleven-year-old Remi Savioz (right) with her older sister, Baela. Remi was diagnosed in 2008 with Glut 1, a rare disease that affects approximately 200 people worldwide.
Courtesy of Samra Savioz
Grab your bike and helmet and start rolling for a good cause. But, “if you don’t roll, come and stroll,” says Samra Savioz, of the North Hills, who founded The Remi Savioz Glut 1 Foundation.
Savioz is referring to the Ride for Remi Bike Tour & Carnival, the foundation’s inaugural event, which will be held on Sat., July 24, at the North Park Boathouse.
The organization began in honor of Samra Savioz’s 11-year-old daughter, Remi, who was diagnosed with Glucose Transporter Type 1 Deficiency Syndrome, or Glut 1 DS, in fall 2008. This rare disease prevents glucose from reaching the brain, meaning that the brain does not receive the fuel it needs to function properly. An estimated 200 people in the world have the disease.
“It became very evident that there was nothing available,” Samra says of the lack of awareness and funding. “I said, ‘I think what I need to start is I need to start a foundation.’”
So, that's exactly what she did.
“I want my daughter to outlive me,” she says. “I want to create a legacy, create a community of support and awareness.”
Samra says she did a lot of reading before applying for 501(c)(3) status; in December 2009, she was approved to establish the nonprofit in her daughter's honor.
“Remi’s genuinely gifted with happiness, which makes this [living with Glut 1] so much easier.”
Living with Glut 1 DS is not easy; it’s a daily struggle. Due to the lack of research and knowledge about the disease, Remi’s only treatment option is the ketogenic diet, a restrictive diet that consists of mostly fats—butter, oils and mayonnaise—straight from the jar. Eating these fats produces ketone bodies, or chemicals that the body can burn for energy, similar to glucose. Because Glut 1 DS prohibits glucose from reaching the brain, people with the disease are forced to consume a high amount of fat so the body can burn ketone bodies for energy.
Though Kerry Schurman, a family friend and foundation volunteer, says she has noticed improvement in both Remi’s focus and abilities due to the regimen, she points out that it takes a toll on the body. Remi has experienced kidney problems since beginning the diet in October 2008. She has also developed brittle bone disease and osteoporosis due to the diet.
But for now, it’s the only option, since there is limited knowledge about how else to combat the disease.
Samra says Dr. Juan Pascual, of the University of Texas Southwestern, has conducted research concerning Glut 1 DS and is interested in furthering his work. He has been unable to secure funding through grants from organizations such as the National Institutes of Health.
Thus, fundraising becomes important; Samra says all the money the foundation raises will go to another nonprofit, or a university, in order to pay for research, education and awareness.
She and Schurman agree that more awareness will help others. Pointing to the fact that Remi was misdiagnosed for more than eight years, the pair believes that there are more people affected by the disease than known at the moment.
So Samra wants to change that. And though few have heard of Glut 1 DS, she says that does not mean those affected do not need just as much support as other good causes receive.
That support might just help those in need.
BIKE AND RAFFLE AWAY GLUT 1 DS
Samra Savioz herself is a cyclist, so she says she felt a bike tour was a great way to begin raising money for the Foundation. Bike Tour cyclists have options: a 25- or 50-mile bike ride or a 5-mile family bike ride or walk. Routes will be provided to participants the day of the event.
The carnival will include a raffle and Chinese and silent auctions. Schurman says the silent auction features items from more 400 local businesses—including Vera Bradley bags, restaurant gift certificates and Pittsburgh Penguins tickets. The carnival also promises inflatables, clowns, crafts, balloons and food. (Ride for Remi Bike Tour & Carnival North Park Boathouse, Pearce Mill Road, Allison Park. Sat., July 24. Bike Tour Registration: 6:30 a.m., 50-mile ride: 7:30-8 a.m., 25-mile ride: 8-9 a.m., 5-mile family ride: 10 a.m.; Adults, $35, Kids under 12, $15. Carnival and silent auction: noon-4 p.m.; Carnival admission, $5; Carnival activity tickets, 4/$1.Boathouse info: 724/935-1968)
RALLY FOR THE BUCS AND GLUT 1 DS
The Remi Savioz Glut 1 Foundation will host an awareness night at PNC Park on Sept. 3 during the Pirates-Nationals game. Those interested in attending must purchase tickets in advance with an accompanying flier. (The Remi Savioz Glut 1 Awareness Night, PNC Park, 115 Federal St., North Shore. Fri., Sept. 3, 7:05 p.m. Tickets: $12-20. Info: 412/325-4731).
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A series spotlighting Pittsburgh’s passion for doing good.
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