Tag Archives: rasmussen’s syndrome

I heard from one of my research friends that there is promising news coming out of France about TNA alpha inhibitors and their success in stopping RE.  TNA alpha inhibitors are a class of drugs that are currently used to treat … Continue reading

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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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  On March 13th, the annual Lifting For Grace fundraising event will take place in our home town at Darien High School.  The event is focused on raising awareness for Rasmussen’s encephalitis as well as funds for our research programs … Continue reading

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I continue to be contacted by parents from every corner of the world desperately seeking help for their children.  Most recently the e-mails have come from Israel, Rumania, and in the States from California.  Many of the e-mails ask if there … Continue reading

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We are in the early stages of looking at post high school alternatives and it is a real challenge to navigate the labyrinth of schools available to young adults with learning and physical disabilities.  Many schools offer programs that assist individuals … 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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I am delighted to report that the scientific notes from the latest research conference held two months ago on the campus of UCLA are now available.  These notes represent the latest science and research related to rasmussen’s.  I encourage you … Continue reading

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On March 13th and 14th the Blue Wave Football Team will compete against rival Brien McMahon in a lift-a-thon with a twist. The teams will lift weights, lots of them, but more importantly, they will lift spirits and improve lives … Continue reading

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Just got back from Los Angeles where I participated in our 3rd research symposium devoted to rasmussen’s encephalitis.  The RE Children’s Project sponsored the event and it was a successful gathering.  Held on the campus of UCLA at the Ronald Reagan … Continue reading

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Click on the  highlighted link to see our story which made the cover of the December issue of the Epilepsia Journal:  My Life With RE.  Straight from the heart…. Just got back from the American Epilepsy Society Meeting in Washington DC.  Terrific two days of meetings topped … Continue reading

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