Tag Archives: epilepsy
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
Posted in General Information
Tagged Blue Wave, epilepsy, hemispherectomy, rasmussen's syndrome, RE Children's Project
Leave a comment
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
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
An important study came out this week that links epilepsy and inflammation. The study implies that an approach for the treatment of epilepsy could involve the use of anti-inflammatory drugs. This finding is important for rasmusssen’s on a number of … Continue reading
Posted in General Information
Tagged epilepsy, hemispherectomy, rasmussen encephalitis, RE Children's Project
Leave a comment
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
There is an increasing body of research documenting the ill effects of a sedentary lifestyle. All of the research is supporting the same conclusion: less sitting is more important than increased exercise. Watching your diet and exercising may not offset … Continue reading
Watch this video of a local fundraising event for the RE Children’s Project. Grace is briefly interviewed.
Posted in General Information
Tagged encephalits, epilepsy, hemispherectomy, ramussen's encephalitis
Leave a comment
This past Friday the Institute of Medicine released its report on epilepsy, Epilepsy Across the Spectrum: Promoting Health and Understanding. The RE Children’s Project was a report sponsor. Click here to see the joint press release that was issued by … Continue reading
This week the Institute of Medicine will be releasing its report on epilepsy entitled, “Epilepsy Across The Spectrum.” The release is an important event as the IOM’s reports become source documents for the development of public policy. This report provides … Continue reading
Posted in General Information
Tagged epilepsy, Rasmussens Encephalitis, RE Children's Project
Leave a comment
Help Us Make A Difference
For information please e-mail: Follow us on these social networks
|
