The RE Children's Project was founded in 2010 to increase awareness regarding Rasmussen's Encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure. The organization also supports research dedicated toward 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 focused on finding the cause and an eventual cure for RE.
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. 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.
I am the father of a 15 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.
For recent updates on Grace click on the Blog tab above. To read her story from the beginning please click here. Watch this brief video to see what we are doing to find a cure.
Follow our journey and learn about life on half a brain. Please help us find a cure to a rare and devastating disease. We are are here to help, click here to e-mail me today.