Ramussen’s encephalitis, also known as Rasmussen’s syndrome, is an extremely rare, progressive disease. It causes drug resistant seizures, cognitive impairment, and eventual paralysis of half the body within a year or two of the first seizure. Sometimes, Ramussen’s encephalitis can also include cortical dysplasia.
There is no known cause or cure for Rasmussen’s encephalitis. The only known treatment to stop the seizures is hemispherectomy.
For more information:
RE Children’s Project: 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 for RE. The organization has sponsored cross-disciplinary research conferences and has funded leading edge research around the globe.
The Hemispherectomy Foundation: The Hemispherectomy Foundation, a 501(c)(3) non-profit organization, was founded to provide emotional, financial, and educational support to individuals and their families who have undergone, or will undergo, a hemispherectomy or similar brain surgery.
The Hemispherectomy Foundation maintains a very active Facebook page here for families of children with Rasmussen’s encephalitis to connect both before and after surgery. There is also a Facebook page for spanish-speaking and French families impacted by hemispherectomy.