The RE Children’s Project Inc. announced today that its Building New Pathways Conference will take place October 6th, 7th, and 8th at the Stein Erikson Lodge located in Deer Valley, Utah. The conference will be attended by a select group of 50 global experts that are coming to together to put forth bold and innovative ideas to help define a research agenda for Rasmussen’s Encephalitis (RE). Attendees will include basic scientists, neurologists, immunologists, geneticists, biochemists, and clinicians from many of the world’s foremost universities and research institutes. The conference will be funded by the RE Children’s Project, a 501 c3 philanthropic organization founded by Seth Wohlberg to find a cure for RE.
RE affects about one in a million children that are usually 4 to ten years of age and perfectly normal when the disease strikes. Apart from radical brain surgery, there are no long term effective treatments. However, the belief that RE is an autoimmune disease—in which the person’s immune defense system mistakenly attacks the body’s own tissue—presents the opportunity to exploit recent advances in immunology to find a cure for the disease.
Two years ago Seth Wohlberg’s daughter, Grace, was a happy, healthy, ten year old who loved the normal activities of everyday life such as playing sports and spending time with her friends. Then one day, out of the blue, Grace had an epileptic seizure. The seizures soon become everyday occurrences that robbed their daughter of her life. After months of tests and failed drug treatments, the worst case scenario was confirmed. Grace had a rare neurological disorder called Rasmussen’s Encephalitis that was progressively destroying the right side of her brain. Without drastic intervention, Grace’s seizures would worsen and, not only would she lose the use of the left side of her body, but she would also develop severe cognitive problems. The only option was to allow doctors to perform a hemipsherectomy—a surgery to remove ½ half of Grace’s brain.
Mr. Wohlberg believes that there is a strong potential for breakthroughs in the treatment of RE and so convinced that he is sponsoring the “first of its kind” research conference devoted to RE. “The response from the medical community has been encouraging and supportive. We have a created a buzz and while we are in the first inning, we believe we have a real shot to ignite a research effort. If we can crack RE, it will certainly help the 1,000,000 individuals in the US with incurable epilepsy in their quest to find a cure,” Mr Wohlberg stated.
The goal of the conference is to develop and identify a roadmap that contains the specific next steps for research into RE. If Mr Wohlberg is successful, he will join a growing band of motivated parents whose efforts have spearheaded significant medical research, especially into rare diseases that tend to be neglected in mainstream research programs. Mr Wohlberg himself has experience as a patient advocate for medical research. In the 1990s he was on the Board of Trustees for the National Psoriasis Foundation and raised money to establish a BioBank.
“Psoriasis is another disease similar to RE and epilepsy that was stigmatized and no one cared about it in the 90s. Over a generation that was turned around and we are now looking to do the same with RE, but in a much shorter timeframe,” added Mr. Wohlberg. Mr Wolhberg is aware that finding a cure for RE will take a lot of effort and resources. His plans call for him to raise $3 to $5 million within 3 years to jumpstart the research into RE.