Imagine living with half a brain. Imagine making the decision to have 1/2 your child's brain removed.
Seth Wohlberg is the father to a teenage daughter who developed Rasmussen's Encephalitis at 10 years old. In February 2009 she underwent hemisphrectomy surgery and in March 2010 had a second "redo" surgery to prevent additional seizures. Rasmussen's encephalitis (RE) is a rare neurological disease that causes intractable epileptic seizures, cognitive deficits and paralysis of 1/2 of the body. The disease process typically runs its course over a 1 to 2 year period during which time one half of the body is rendered useless — hemipelegia — and epileptic seizures continue unabated.
Seth Wohlberg is also the man, determined to help future kids avoid the tragedy of a hemisphrectomy, who started the RE Children's Project. RE Children's Project is a non-profit whose sole focus is promoting research into Rasmussen's Encephalitis. The only treatment is a radical brain surgery that removes half the brain. Since its founding, The RE Children's Project has funded research and sponsored research symposiums; more recently it has focused its efforts on the collection of RE tissue to advance genetic and viral analyses to gain a better understanding of RE.
The RE Children's Project annual fundraiser, Turning Love Into Power III, will take place at the Woodway Country Club in Darien CT at 7 pm on Feb 2, 2013. Dr. Gary Mathern will be the guest speaker with special honorees, Marj and Rob Trifone. Dr. Gary Mathern, UCLA is one of one of the key research partners dedicated to helping children with incurable epilepsy and is a pediatric neurosurgeon who specializes in brain surgery. He is pictured here with Grace Wohlberg, Seth's daughter.
Proceeds from the event will be directed towards research into Rasmussen's Encephalitis and other rare epilepsy syndromes.
Please aid in the mission to help future kids avoid this tragedy.
For ticket information contact swohlberg@rechildrens.com
To donate or to find out more about Grace's journey: www.rechildrens.org
More about RE:
RE typically affects previously normal children aged between two and ten years. An unusual feature of the disease that sets it apart from other inflammatory diseases of the central nervous system, is that it is usually confined to one hemisphere of the brain. RE is resistant to standard anti-seizure medicines thus making possible the only known "cure" for the condition — a surgical hemispherectomy — the removal or disconnection of the affected side of the brain. Recent progress in understanding of the disease, and the emergence of therapies that slow disease progression and help control symptoms, has led some researchers to believe that more targeted and effective medical treatments are potentially within reach.