Tag Archives: hemisphrectomy
We had a research conference call this week with Dr. Charles Chiu, University of California, San Francisco. Dr. Chiu is a recipient of a research grant from the RE Children’s Project and is an infectious disease expert. He is the … Continue reading
In the past week or so I have watched two interesting shows that raise questions about the process by which drugs are approved for marketing in this country. The first program was an Outside The Lines program on ESPN that … Continue reading
Ever since we learned that Grace had rasmussen’s encephalitis, we focused on rasmussen’s as a seizure disorder, which it is, an epilepsy. The disease is named after Theodore Rasmussen, a famed neurosurgeon who championed the hemispherectomy as the only treatment … Continue reading
We are entering the third year of our journey as we strive to increase the awareness of rasmussen’s encephalitis for the primary purpose of raising funds to advance research for a cure. We are committed to our mission and maintain … Continue reading
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Tagged epilepsy, hemisphrectomy, Rasmussens Encephalitis, RE Children's Project
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We have been extremely busy this past week pushing forward on a number of fronts. During the first two years of the RE Children’s existence we avoided forming a scientific board to maintain our flexibility and to ensure that we … Continue reading
Posted in General Information
Tagged AES, epilepsy, hemisphrectomy, Rasmussens Encephalitis, RE Children's Project
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This week was a big week for us as we formally announced the formation of the RE Children’s Research Consortium. This is a big deal in our efforts to advance research into ramussen’s encephalitis. Please click here to view the … Continue reading
I am reading a great book called The Emperor of All Maladies. I mentioned it on my Facebook page a week or so ago. The subtitle is “A Biography of Cancer.” The book is a non-fiction account of the history … Continue reading
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Tagged epilepsy, hemisphrectomy, Rasmussens Encephalitis
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We just returned from the Hemi Family Conference in Anaheim, California where 75 hemi families came together to share experiences and learn from one another. We attended expert panels on topics such as education, estate planning, and medical issues from … Continue reading
Posted in General Information
Tagged hemisphrectomy, Rasmussens Encephalitis, RE Children's Project, research
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Grace read a book this past week to a 4th grade class in the Greenwich school system. The event was organized by Tami Serrino, a teacher and one of Grace’s tutors. Grace practiced beforehand and was a bit nervous at … Continue reading
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