Tag Archives: RE Children’s Project
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
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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Tagged Blue Wave, epilepsy, hemispherectomy, rasmussen's syndrome, RE Children's Project
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I attended a meeting this week with Grace’s teachers. In our experience the most difficult issue for the teachers to grasp is the loss of vision that results from the hemispherectomy surgery and how this reverberates through every aspect of … 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
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
We are in the early stages of planning our Turning Love Into Power III fundraiser to be held February 2, 2013. This year’s co-chairs are Jill Walker and Karen Dunn. We have an early flyer out and looking to changes … 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
I have had a severe case of psoriasis and psoriatic arthritis for 30 years. During my life there have been significant scientific advances that have produced effective treatments. In recent years the class of drugs known as biologics have helped … 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
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