Category: News

Breakthrough for CF provides hope for all patients

A recent article in Scientific American about a revolutionary drug for Cystic Fibrosis (CF) patients should provide hope for everyone facing rare diseases.  The article describes in great clarity the obstacles to creating a groundbreaking new drug.  And the enormous costs – often measured in the billions of dollars.  Yes, billions with a B! “Ultimately the …

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Valentine’s Day

Most of our attention over the past 6 – 8 weeks have been directed towards the Florence Forth road race.  Today we wanted to offer a trip down memory lane from Valentines Day 2012. Happy Valentines Day Two years ago, Leslie and Florence’s Pops combined to write this blog post. This was Florence’s last big …

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It’s Our 1st Anniversary

Today, December 17th, is the one year anniversary of the Autoimmune Encephalitis Alliance becoming a non-profit organization. 2013 was a wonderful year with many great events, including Florence Forth, Across the Starting Line, educational Grand Rounds and book readings and many amazing connections with families, patients and doctors. We look forward to working with all of …

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Encephalitis groups focusing on AE

In a sign of the rising awareness of autoimmune encephalitis (AE), several encephalitis focused groups are expanding their work to include AE. Next week, Leslie and I are heading to New York to meet with members of the larger Encephalitis community.  The Encephalitis Society, a UK based group, has called multiple groups together to discuss how …

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