Happy 3rd birthday to the AE Alliance!

Leslie, one of the AEA founders, presents our timeline during the Dec. 15, strategic meeting.

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 families and care-givers and to provide information to the scientific and medical circles; all with the greatest goal of providing a community for everyone affected by AE to find a place of support.

Some of our 2015 highlights include the following:

  • Director Gerard Barrett announces he will adapt Susannah Cahalan’s bestselling book Brain on Fire: My Month of Madness, about her struggle with autoimmune encephalitis into a feature length movie. It is set for release in 2016.
  • The third annual Florence Forth road race held in Durham, NC, raises over $60,000 for AEA.
  • The second annual AEA Family Lunch held in Durham, NC, attracts over 100 family members representing 27 patients.
  • AEA board member Susannah Cahalan presents at the Lancet magazine’s “Neurology Autoimmune Disorders Conference” in Barcelona, Spain.
  • The AEA’s Clinicians Network continues to grow; now doctors have been identified on nearly every continent.
  • AEA hires its first consultant to serve as interim staff to help with strategic planning.

Wherever you may be in your fight with AE, we hope that celebrating the birthday of the AE Alliance will give you a spot of joy in knowing that you are not alone.