The RE Children's Project was founded in 2010 to increase awareness regarding Rasmussen's Encephalitis (RE). The organization also supports research focused on finding a cure as well as the recovery process following hemisphrectomy surgery, a life altering, radical brain surgery that is the only known "cure" for the disease. Since our founding we have sponsored cross-disciplinary research conferences and funded leading edge research around the globe.
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.
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. The surgery in most cases stops the seizures, but at a high cost to the quality of life for the individual.
I am the father of a 20 year old daughter who developed rasmussen's at 10 years of age. In February 2009 she underwent hemisphrectomy surgery and in March 2010 had a second "redo" surgery to address additional seizures. Supported by a loving community along with our family and friends we decided to help other families avoid our nightmare.
To read our story from the beginning please click here.