Category: News and Events

A daughter remembers her mom to help others with AE

The following was sent to us by Erin Wicke Dankert to honor her mother Rita. “My family has been very open with my Mom’s experience in hopes of helping others with this condition.”  AEA is so appreciative of this personal sharing by all who loved Rita. In March, my family suffered the devastating loss of …

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Call for abstracts on autoimmune encephalitis

At the Autoimmune Encephalitis Alliance one of our goals is to promote research among professionals so that advancements can be made in the study and treatment of autoimmune encephalitis. We are pleased that in the spirit of collaboration the United Kingdom-based Encephalitis Society has extended the call for abstracts for their annual meeting to the …

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Autoimmune encephalitis community loses an amazing doctor far too soon

A very heavy heart, shock, and sadness met our hearing of the news that  Dr. Jessica Panzer passed away after a short, courageous battle with non-smokers lung cancer. She received M.D. and Ph.D. degrees from the University of Pennsylvania in 2006. She continued on at the University of Pennsylvania and the Children’s Hospital of Philadelphia as …

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HESA helps promote encephalitis research with funding pledge to AE Alliance

Two U.S. non-profits join forces to combat autoimmune encephalitis. “The AE Alliance is proud of the long-standing relationship with the Hashimoto’s Encephalopathy SREAT Alliance. We are grateful beyond words for HESA’s generosity. This collaboration allows both groups to look anew at imaginative ways to raise awareness on all autoimmune encephalitis fronts, fight this disease, and …

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Recovering anti-NMDAR patient shares advice via voice memo

Shawn Kregan contacted the Autoimmune Encephalitis Alliance in August of 2016, and we have been connecting regularly ever since. He has put together a voice memo to aid and inspire those who struggle with AE.  Shawn wants everyone to know that sharing experiences gives others confidence and strength, so don’t be afraid to tell people …

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Join 1600 others for Florence Forth Race and Family Lunch on March 4, 2017

You don’t have to be a runner or walker to support those affected by autoimmune encephalitis on March 4, 2017, but if you are, come share your spirit, laughter, and competitive spirit with 1600 soon-to-be friends at Florence Forth. There is also a wonderful Family Lunch for patients and their immediate families at noon (doors …

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Rare Disease Day is Feb. 28

The AE Alliance is proud to participate in Rare Disease Day, launched by EURORDIS and its Council of National Alliances, on February 28. We appreciate the Mesothelioma Cancer Alliance and the National Organization for Rare Diseases bringing us into this day of recognition. This year’s slogan is “With research, possibilities are limitless.” While each participating organization …

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Largest fundraiser for AEA, “Florence Forth,” coming up on March 4

          Did you know that our largest fundraiser is coming up on March 4, 2017, in Durham NC? That’s right, it is time for the 5th annual Florence Forth run/walk, and Family Lunch.  Individuals and teams are welcome. The events in 2016 attracted almost 1500 runners/walkers, 300 volunteers, and 150 family …

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Things siblings of children with special needs struggle with – from The Washington Post

Jamie David Smith has written a terrific article on the struggles of siblings of special needs children. Smith speaks to Rachel Feichter whose daughter, Talia, has autoimmune encephalitis. “Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. …

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