The RE Children’s Project and the RE Children’s Research Consortium is pleased to announce the recent hiring of Joseph Voros as Research Coordinator for the RE Children’s Research Consortium. Voros will facilitate the Research Consortium’s collaborative research 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. Voros will be based at Johns Hopkins University School of Medicine, under the direction of Dr. Carlos A. Pardo, associate professor of neurology and pathology at the Johns Hopkins Hospital Department of Neurology.
Joseph Voros comes to the Consortium with experience in the field of public health, working as an independent contractor in Washington, D.C., and Haiti. A recent Master of Public Health graduate from George Washington University, Voros is also the recipient of the White House President’s Volunteer Service Award, a Merit Scholarship recipient at George Washington University, a Gold Medal Research Award recipient, as well as a National Institute of Health representative.
“Joe Voros will be responsible for building out the Research Consortium, cataloging tissue samples, identifying patient registries, among other duties,” noted Seth Wohlberg, founder of the RE Children’s Project who is funding the RE Children’s Research Consortium. “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 clinical information, brain tissue, biological samples (e.g., blood cells, plasma/serum or cerebrospinal fluid), that can then be compared and generally available to others in the Consortium.”
The goal of the RE Children’s Research Consortium is to make clinical information as well as brain tissues and biological samples more available for research purposes directed towards RE. Another objective is to expand the Consortium and enlist all research organizations, both US-based and global, to focus on research studies to find the cause of RE and design potential treatment approaches. The Consortium will provide resources and help to coordinate such research efforts by coordinating the use of RE related clinical information, tissues and biological samples or advanced diagnostic testing capabilities and facilities.
“We see the RE Children’s Research Consortium as a way for researchers and physicians throughout the world to share knowledge, resources and breakthroughs with the main goal to identify the cause of RE and focusing on potential treatments,” noted Dr. Carlos A. Pardo, associate professor of neurology and pathology at the Johns Hopkins Hospital Department of Neurology, who will oversee the virtual biorepository and coordination effort at Johns Hopkins.
RE typically affects previously normal children between the ages of two and fifteen years old; it rarely affects adults. The disease process typically 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 the disease 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.
The Wohlberg family founded the RE Children’s Project after their daughter Grace, who in 2008 and only ten years old, started to experience epileptic seizures. After months of testing, her parents learned that she had the extremely rare neurological disorder of RE. Grace underwent an initial hemispherectomy surgery in February 2009. However, her seizures recurred so her parents then brought Grace to UCLA for additional surgery, which was performed by Dr. Gary Mathern in March 2010. Today, Grace is back in school adjusting to her new life with the assistance of a full-time aid. While the surgery has stopped the seizures, Grace faces lifelong disabilities that resulted from the surgery including partial blindness, cognitive issues and learning how to walk again. Since then, the foundation has sponsored cross-disciplinary research conferences and funded leading edge research around the globe focused on finding the cause and an eventual cure for RE. The organization also supports research dedicated toward the recovery process following hemispherectomy surgery.
To learn more about the RE Children’s Project and the RE Research Consortium, visit www.REChildrens.com. To learn more about the organizations involved in the RE Research Consortium, visit http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=561&action=detail&ref=1718, http://www.hopkinsmedicine.org/neurology, or http://www.childrenshospital.org/clinicalservices/Site1549/mainpageS1549P0.html.