Unique Research Consortium Accelerates Study into Rare Childhood Disease of Rasmussen Encephalitis
Removing Half the Brain Only Treatment for Neurological Disease That Strikes Otherwise Healthy Children
DARIEN, Conn., Oct. 18, 2011 /PRNewswire-USNewswire/ — The RE Children’s Project, a non-profit organization founded to increase awareness and fund research into Rasmussen Encephalitis (RE), a rare neurological disease that causes intractable epileptic seizures, cognitive deficits and paralysis of half of the body, is excited to announce a unique research consortium between Children’s Hospital Boston, Mattel’s Children’s Hospital UCLA and Johns Hopkins University School of Medicine, led by Drs. Frances Jensen, Gary Mathern, and Carlos A. Pardo, respectively.
“The goal of the RE Children’s Research Consortium is to make clinical information as well as brain tissues and biological samples available for research purposes directed towards RE,” said Seth Wohlberg, founder of the RE Children’s Project. Wohlberg noted that the RE Children’s Research Consortium is the first of its kind that encourages research institutions and hospitals to work collaboratively to create a virtual repository for information, tissue, and biological samples that can then be compared and generally available to others in the Consortium.
The goal of the Consortium is to expand and enlist all research organizations, both U.S.-based and global, to focus on research studies to find the cause of RE and design potential treatment approaches.
RE typically affects previously normal children between the ages of two and 15 years old; it rarely affects adults. The disease runs its course over a one-to-two year period during which time one half of the body function is rendered useless and epileptic seizures continue unabated. An unusual feature of RE is that it is usually confined to one hemisphere of the brain and is resistant to standard anti-seizure medicines. The only known “cure” is a cerebral hemispherectomy — the removal or disconnection of the affected side of the brain. This radical surgery has been the standard form of treatment for more than 50 years. 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.
To learn more about the RE Children’s Project and the RE Research Consortium, visit www.REChildrens.com.
Contact: Jenifer Howard
SOURCE RE Children’s Project