RE Children’s Project Appoints Scientific Advisory Board
Directs Research for Study of Rare Childhood Disease
DARIEN, Conn., Jan. 25, 2012 /PRNewswire-USNewswire/ — The RE Children’s Project, a non-profit dedicated to supporting scientific research directed towards the treatment and cure of the rare childhood disease Rasmussen Encephalitis, is pleased to announce the formation of a Scientific Advisory Board to oversee research initiatives funded by the non-profit.
Appointed to the RE Children’s Project Scientific Advisory Board are: Gary Mathern, M.D., professor Pediatric Neurosurgery, director, UCLA Pediatric Epilepsy Program, Mattel Children’s Hospital, Ronald Reagan UCLA Medical Center, Los Angeles; Frances Jensen, M.D., professor of Neurology, director Epilepsy Research, Boston’s Children’s Hospital; Carlos Pardo, M.D., associate professor of Neurology and Pathology, Johns Hopkins Hospital, Baltimore, Md., Helen Cross, Ph.D., Prince of Wales chair Childhood Epilepsy, Great Ormond Street Hospital for Children, United Kingdom; and Christian Bien, Ph.D., chief physician, Mara Hospital, Germany.
Participating in a broader research consortium are the additional institutions of Children’s National Medical Center, and NYU Comprehensive Epilepsy Center, under the leadership of Dr. William Galliard and Dr. Orrin Devinsky, respectively.
“As the RE Children’s Project enters our second year, it is a very exciting and logical step to have a Scientific Advisory Board as we attract additional funds for research into RE,” noted Seth Wohlberg, founder of the RE Children’s Project.
RE typically affects previously normal children between the ages of two and 15 years old; it renders one half of the body useless by unabated epileptic seizures. An unusual feature of RE is that it is usually confined to one hemisphere of the brain and resistant to 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 50+ years. The Wohlberg family founded the RE Children’s Project after their daughter Grace, who in 2008 and only ten years old, started experiencing uncontrollable seizures. After months of testing, they learned that she had the extremely rare neurological disorder of RE. Recent progress in understanding the disease, the emergence of therapies that slow disease progression and control symptoms, has led researchers to believe targeted and effective medical treatments are potentially within reach. www.REChildrens.org.
Contact: Jenifer Howard
SOURCE RE Children’s Project