DARIEN, Conn. Since his daughter, Grace, was diagnosed with Rasmussen's Encephalitis in 2008, Seth Wohlberg has been working to fund research and raise awareness of the rare neurological disorder. The Darien resident recently helped to form a unique research consortium between three institutions to encourage collaboration and sharing of research.
"It's sort of unorthodox," Wohlberg said of the tissue- and data-sharing project. "The idea of the consortium is that there's an abiding set of principles that they all agree on for collaborative and more open interaction." He said such sharing is rare among medical institutions.
RE typically strikes children between 2 and 15. In one to two years, it causes paralysis of half the body and frequent serious seizures. The standard treatment is a hemispherectomy, in which half the brain is removed. Grace underwent the procedure in 2009, when she was just 10. Afterward, Wohlberg started the RE Children's Project , a nonprofit dedicated to raising awareness and funding research.
"It's an understatement to say it's been difficult," Wohlberg said. Grace is still adjusting to life after the surgery. She loved to swim before and recently got back into the pool for the first time in two years. "That was a great day," Wohlberg said.
The research is being conducted at Children's Hospital Boston, Mattel's Children's Hospital UCLA and Johns Hopkins University School of Medicine. Researchers there will create a virtual repository for clinical information, brain tissue and biological samples that can be compared and be made available to others in the consortium in an effort to understand more about RE.
Wohlberg credits his fellow Darien residents for being supportive of his family and helping to raise money. Wohlberg's son was captain of the Darien High School football team, and for the past two years players have taken part in a weightlifting competition to raise money for the RE Children's Project.
Wohlberg said doesn't expect the consortium to produce a major breakthrough any time soon, but progress is being made. Scientists looking into the disease have found viral and genetic clues and are learning more and more every day about the rare disease.
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