Tag Archives: hemisphrectomy

A year ago a terrible tragedy happened to a very special person, Pouneh Bahri.  After enduring the hardship and tragedy of Rasmussen’s encephalitis, and then striving to find her own way in life, she was accidentally killed in a bus accident. … Continue reading

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I hope you are doing well.  I wanted to follow-up on a letter I sent you to let you know about some of the progress we are making with the RE Children’s Project (www.rechildrens.org) in the ongoing effort to find … Continue reading

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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

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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

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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

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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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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

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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

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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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