Tag Archives: hemispherectomy

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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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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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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I have frequently written about  how fortunate we are to live during the time of the internet and social media where we are empowered to reach across the globe and connect with one another.  We are blessed today to be able to learn from … Continue reading

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This week we transferred fresh tissue following a hemispherectomy from Duke University to UCLA.  This case was a great example of the entire Rasmussen’s community pulling together for the greater good of advancing research into RE.  I was initially contacted by a … Continue reading

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A mom of a child with rasmussens recently asked me if I refer to Grace as still having rasmussens even though Grace is post-hemispherectomy and seizure free.  This question made me realize that many families that are post-hemispherectomy and seizure free … Continue reading

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        We are gearing up for our fundraiser to be held on February 2nd.  Please help us in our effort to find a cure for rasmussen’s.  Rasmussen’s is despair, it is a thief that robs kids of … Continue reading

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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 … Continue reading

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Came across an article this week that studied the relationship between the brain and the stomach, known as the gut-brain axis.  This area of research resonates with many in the RE and hemispherectomy community as stomach ailments are common among … Continue reading

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I received a call from my friend Lori Sames who is another patient advocate fighting to find a cure for a rare disease on behalf of her child,  and we shared our similar frustrations regarding the institutional barriers to accelerating … Continue reading

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