Tag Archives: rare disease
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
With the hiring of our research coordinator, Joe Voros at Johns Hopkins, there has been a noticeable uptick in our research discussions and activities. Our initial focus is putting in place the infra-structure to transport human tissue to UCLA, Hopkins, … Continue reading
In the past week or so I have watched two interesting shows that raise questions about the process by which drugs are approved for marketing in this country. The first program was an Outside The Lines program on ESPN that … Continue reading
Deb and I would like to express our heart-felt thanks to all of you that have made our life a bit easier the last few years and to our supporters that have stepped forward to join in our mission to … Continue reading
I read a news article this week about the first hemispherectomy performed in Ireland at the Temple Street Children’s Hospital in Dublin. This surgical technique first used for RE in the 1950s by Theodore Rasmussen in Montreal, Canada has now, … Continue reading
Posted in General Information
Tagged epilepsy, rare disease, Rasmussens Encephalitis, RE Children's Project
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I have read a few articles this week about rare diseases some of which I posted on our facebook page. The articles capture the momentum building for drug discovery by private pharmaceutical and biotech companies to find cures and treatments … Continue reading
Posted in General Information
Tagged epilepsy, rare disease, Rasmussens Encephalitis
Leave a comment
This week was a big week for us as we formally announced the formation of the RE Children’s Research Consortium. This is a big deal in our efforts to advance research into ramussen’s encephalitis. Please click here to view the … Continue reading
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