Memphis native John Scott and his wife Laurian lost their two small children less than a year apart to the same rare motor neuron disease. Diagnosed with Brown-Vialetto-Van Laere, or BVVL, both Thisbe and Noah Scott lost the ability to swallow, hear, and breathe, and passed away before the age of 3.
But the Scotts had some good news this year.
"Researchers have found the gene that causes BVVL," John says.
Since the death of their children, the Scotts have dedicated their lives to raising awareness for motor neuron diseases. In 2008, they developed the Olive Branch Fund to fund research and provide support for those affected by the diseases.
With help from the Olive Branch Fund, the National Institutes of Health and a group of doctors from the United Kingdom collaborated to successfully discover the gene that causes BVVL. The discovery could lead to a cure, not only for the disease the Scott children suffered from but a multitude of other motor neuron diseases.
Thisbe was diagnosed only after her physician Googled her symptoms. At the time, there were only 58 documented cases in the world. Noah was diagnosed with the same disease only a few months after his sister's death.
"We were told by physicians that the only way we could save Noah was to find the infected gene," Laurian says. "We were battling against time."
Motor neuron diseases destroy cells that control muscle functions, including walking, breathing, and swallowing. Most of the diseases are fatal, and all involve forms of paralysis.
"Motor neuron diseases do not have a form of treatment. Even though we are advocating for BVVL families, we are looking for a cure for all motor neuron diseases," Laurian says. "We can potentially help millions."
More funding is needed to continue research toward finding a cure. It is estimated that at least $100,000 is needed each year to fund researchers. In its first two years, The Olive Brand Fund has raised $400,000.
Its next fund-raising event, "A Mighty Voice," will occur on April 17th at the Levitt Shell in Overton Park beginning at 1 p.m. All proceeds benefit the Olive Branch Fund and will continue the Scotts' mission.
"We're trying to create awareness and let people know how horrible this disease is. We're moving into finding a cure," Laurian says.
For more information about the Olive Branch Fund, visit