This blog post provides guidance on diagnostic testing for autoimmune encephalitis, including answers to common questions and and additional resources for families and patients. Please be sure to review the disclaimer at bottom. If you have additional resources or are told something different, please let us know so we can provide the most up to date and …
AE Alliance Blog
The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
Celebrate the holidays with the story of a flourishing AE survivor
As we are in the midst of the holiday season, what better way to celebrate than with a survivor’s story. We are grateful for Brittany’s willingness to write about her illness trusting that it might give some peace (especially this time of year) to the AEA community. MY DARK WINTER By: Brittany DiCapua They say that …
Happy 3rd birthday to the AE Alliance!
The AE Alliance turns 3 years old today! Three years ago on this date, two families that had kids with AE came together in hopes that they could start something to help others suffering from this little-understood disease. The vision was to not only disseminate information to help patients but also to give support to …
Autoimmune Encephalitis Alliance holding strategic meeting
The Autoimmune Encephalitis Alliance is holding a strategic meeting on December 15. The board of directors and invited advisors are gathering in Durham, NC, with the goal of the thinking strategically regarding the organization. Based on this group’s recommendations, we expect to continue to set up structures that will empower the AE Alliance to increase …
“Giving Tuesday” is here!
The first Tuesday in December has become a world-wide call for people to celebrate the art of giving; a joining of communities to “give rather than receive.” Please visit donate to AE Alliance to support our work. If you choose to give please put the hashtag “#GivingTuesday” in the “Public Recognition” field of the AE Alliance site …
Thankful for the AE Alliance community
As all of us who have been affected by AE know, the holidays can be filled with mixed emotions. Some of us are just settling into our role as caregiver, some are seasoned in giving of ourselves in support of someone with AE, and some of us long for the time when we were comforting a …
AE Alliance partnering with strategic development consulting firm
As we look to expand our outreach, the AE Alliance is excited to announce we have retained the strategic development consulting firm moss+ross. Our goal is for moss+ross to guide us through developing a more comprehensive business plan, and provide insight into funding strategies to implement new organizational strategic goals. moss+ross provides fundraising and planning …
Ex-president of Facebook donates $10M to autoimmune research
BuzzFeed News reporter, Stephanie M. Lee, talked to the ex-Facebook president and Napster co-founder, who’s passionate about combating immunological diseases, about his gift to the University of California, San Francisco. BuzzFeed story on $10M gift for autoimmune research
Fellow Survivors Gather at Florence Forth
I am not a runner. I cringe at the thought of running. So naturally, when Susannah Cahalan told me about the Florence Forth Road Race in Durham NC, I was a bit skeptical. However, when she added that there would be fellow survivors of autoimmune encephalitis attending, I made my decision to go. There were …
“We are Survivors”
We are all survivors of autoimmune encephalitis. Patients, families, friends, caretakers, doctors, nurses, rehabilitation specialists, we have all endured the worst this disease can throw at us. And we are surviving. This weekend I had the chance to meet four amazing survivors. Each has their own story to tell. They shared the same stage: a six-year-old …