Darien father uses personal experience to raise funds for research
In an effort to make advances on a rare disorder that can only be "cured" by removing half of the patient's brain, one local father is using his personal experience to help fund future research.
In 2008, Seth Wohlberg's daughter, Grace, began experiencing seizures and was later diagnosed with the rare disorder, Rasmussen's Encephalitis. The disease typically manifests in children between the ages of 2 and 10 and runs its course of a one- to two-year period. During that time, the disease results in epileptic seizures and the eventual paralysis of half of the body if left untreated. However, the only known "cure" for the disease is to remove the affected half of the brain.
"We took Grace to several doctors and hospitals and in 2009, she had half her brain removed," Wohlberg said. "During that time we lived in Baltimore for six to seven weeks while she recovered but after awhile we realized the first surgery wasn't successful and she underwent a second surgery."
Since the second surgery, Wohlberg said his daughter has been essentially seizure-free but she is forced to live a one-handed life. Because research for RE hasn't made significant headway since the introduction of the hemisphrectomy surgery, Wohlberg began gathering resources to launch the RE Children's Project.
"When I was younger I got into philanthropy and that experience lead to the creation of the RE Children's Project," Wohlberg said. "We got a lot of support from the town."
One of the most successful undertakings so far has been the creation of a research consortium which involves researchers from the Children's Hospital Boston, Mattel's Children's Hospital UCLA and Johns Hopkins University School of Medicine.
Wohlberg said the information the researchers at the three institutes discover will also be made available to other researchers to use.
"The realistic goal is to accelerate research for a cure that is non-invasive. We want to cure the disease without surgery," he said.
One of the challenges of funding research for a disease like RE is that because it is so rare, there are few tissue samples available for researchers to study.
"When it comes to RE research the bar is set low unfortunately. It becomes a question of whether you would want to cure Rasmussen's or Alzheimer's," Wohlberg said.
Despite the challenges of finding a possible cure for RE, Wohlberg is optimistic that the Children's Project will also help to draw attention to the issue which may help with the research project.
"Realistically I'm in the top of the third right now," he said. "This is a long, hard slog."
As Wohlberg has worked to bring more attention to RE, he has also been contacted by families who have a child who is suffering from the disease and are seeking help.
"This is not something you want to go through and one tragedy is no better or worse than another," he said.
Wohlberg has also been able to draw more attention to his efforts through social media.
"There is no doubt that technology has helped my cause and the role of technology should not be underestimated. Now people can read from blog from anywhere and I tweet and I'm on Facebook," he said.
For more information about the RE Children's Project, visit www. rechildrens.org.