Join the Fight Against Rasmussen's Encephalitis

From the Warwick Daily News,  Australia: TEENAGER Aaron Payne is recovering in hospital following brain surgery to combat seizures he endures as a result of a condition called Rasmussen's Encephalitis. Aaron and his family travelled to Sydney last week for a hemispherectomy, where surgeons removed the left half of Aaron's brain in an effort to give him a seizure-free life. A friend of the family said the teen spoke his first word since the procedure on Saturday and proving he was a typical teenager, said "no" to his mother. "Sunday was full of highs and lows, which (the family was) told to expect, but language transference is definitely there," the family friend said. "He continued to say a few things and spoke to the neurologist and neurosurgeon who were both surprised and thrilled to hear him, plus very positive about it continuing to improve. "He is an absolute example of faith in action." Aaron faces a long road to recovery but his family are confident he was the will and determination to succeed. He is expected to experience greater weakness to the right side of his body, loss of peripheral vision and cognitive difficulties, including language deficits.

Rasmussen's Encephalitis is a devastating and rare form of epilepsy that has also struck here in Fairfield County.  Grace Wohlberg of Darien has gone through the same grueling surgery that Aaron Payne has had to endure and continues in her fight to recover.  Her dad, Seth Wohlberg started the RE Children's Project in hopes of a cure. The third annual fundraiser for the RE Children's Project, Turning Love Into Power III, will be on February 2, 2013 at the Woodway Country Club in Darien, CT. To find out more about Rasmussen's, Grace's fight, and Seth's work to find a cure, go to REChildrens.org

From Seth Wohlberg:

We continue our preparation for the February fundraiser. We do need your continued support if we are to help families impacted by rasmussen's as well as continue to fund path breaking research projects. This year Dr. Gary Mathern of UCLA will be our special guest. He is a pediatric neurosurgeon and is well known in the epilepsy community as well as the numerous families that he has helped via his surgical expertise. 

We are also recognizing at the event two special supporters, Marj and Rob Trifone. Marj is the Girls Swimming Coach and Rob is the Boys Football Coach at Darien High School. Through their collective efforts Marj and Rob have raised over $50,000 for the RE Children's Project and more importantly, they have personally connected with Grace and found ways to broaden and improve her high school experience. This year Marj graciously offered to Grace the position of "manager" for the swim team. As a 9th grader entering her first year of high school Grace's participation facillitated transition into a new and more difficult social environment.
Please plan on giving any amount in recognition of our event and the work we are doing. If you cannot attend please donate though the website by hitting the donate button and let us know that you care about our work.
The American Epilepsy Society annual conference will take place in early December; this is the largest gathering of epileptologists in the world. We will be attending the meeting and we will see several doctors and researchers as we consider our research agenda for next year. On the research front we continue to collect DNA from RE patients for our sequencing project at Yale and we are in process of arranging a tissue transfer to UCLA from an upcoming surgery in the US.

Please let me know if you are interested in obtaining details about our fundraiser in February, sponsorships are available and if you cannot attend any donation is welcomed. I can be reached at swohlberg@rechildrens.com.
This week we transferred human brain tissue from Alabama to UCLA following an RE surgery. Many thanks to Joe Voros, our research coordinator for so deftly handling this complicated task with such ease and professionalism. The availability of tissue will drive new projects and ideas into rasmussen's research.
The American Epilepsy Society's annual meeting will take place during the first week of December. I believe this is the largest gathering of individuals eacy year devoted to epilepsy. Per their website, "The American Epilepsy Society's Annual Meeting is the premiere meeting for epilepsy and other seizure disorders. The Annual Meeting is an international forum for the exchange of current findings in epilepsy research. Information is communicated and disseminated through symposia, lectures, scientific exhibitions, poster and platform presentations. The Annual Meeting attracts attendees from all over the world and provides educational and networking opportunities for the academic and practicing neurologist, epileptologist, neurophysiologist, neuroscientist, neurosurgeon, internist, pediatrician, pharmacist, nurse, social worker and other professionals." We will be in attendance and have an important meeting scheduled with several researchers and doctors to discuss our future plans for the genetic sequencing of RE tissue.
Congratulations to Marj Trifone, who will be recognized this year at our fundraiser, for coaching the girl's high school swim team to the "Triple Crown." Marj has had an enormous impact on the RE Children's Project by organizing fundraisers and more importantly, by motivating Grace to return to swimming. Recently, this past year she asked Grace to be the "manager" for the team which eased Grace's entry into the high school.
Happy Thanksgiving. Please continue to support our efforts. Thank you.