Tag Archives: rare disease

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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We are in the early stages of looking at post high school alternatives and it is a real challenge to navigate the labyrinth of schools available to young adults with learning and physical disabilities.  Many schools offer programs that assist individuals … Continue reading

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This week we added a reference library for RE to the website.  The library has over 300 references to scholarly publications relating to RE categorized by relevant topics.  Go to the home page of this website to learn more about how … 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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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

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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

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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

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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

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