Tag Archives: Rasmussens Encephalitis
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
Please see this link to an article about our courageous friends, the Payne family in Australia. Their son, Aaron had a hemispherectomy two weeks ago and they were kind enough to volunteer to participate in our research programs. The surgery … Continue reading
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
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
For the past few months we have been transferring brain tissue following hemispherectomy surgery to research teams at UCLA. Yale, and Johns Hopkins. As previously discussed in prior blogs, this is not an easy task and has been an enormous … Continue reading
Last week I commented that adult-onset/slower progression RE is perhaps more common than the researchers and clinicians believe. Adult RE presents itself differently than child-onset which is typically more severe and not responsive to drugs. Nonetheless, adult RE wreaks havoc … Continue reading
This week due to the incredible efforts of our Research Coordinator, Joe Voros we are shipping RE tissue from Brazil to UCLA. Last week we successfully shipped from Australia. In a week or so we will be posting a protocol … Continue reading
We spent the weekend at the Hemispherectomy Conference in Baltimore which brought together over 75 families and 270 people that have been impacted by hemispherectomy surgery. This is a special conference that provides an opportunity for parents to share experiences … Continue reading
We had an exciting week and it was all good. We started the week by going to the Yankees game and had a great time as they beat their cross-town rivals the New York Mets. We rode mass transit to … Continue reading
Grace’s first surgery in 2009 failed to stop her seizures and she then had to undergo another surgery in 2010 to remove additional brain tissue. These second surgeries are known as redos. This comes to mind as I met with … Continue reading
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