Leslie and Will and Susannah and Helen and I (with invaluable help from Elisabeth and many many other people) organized an AE Alliance event this past week. We brought about 25 of the world’s top research scientists and clinicians in the autoimmune encephalitis area to Durham for two days of facilitated private conversation. Our invitees traveled from the Netherlands, the U.K., Australia, Canada and all over the U.S. Many participants also gave Grand Rounds or other talks at Duke, as part of what we called Duke Autoimmune Encephalitis Awareness Week. But the core purpose of the gathering was to form an International Working Group. This Working Group will collectively write authoritative documents on differential diagnosis and treatment — documents that will be of value to clinicians at every level of the health care system. Working Group collaborations on case reporting can improve standardization of diagnostic assays, identify best practices for dosing with current medications, and offer much else of immediate value to AE patients in the short term. In the longer term a coordinated international network can, in collaboration with families, spur greater access to funding for prospective clinical trials of current and future treatments. And it all helps create a culture of urgency in which the ultimate aim – a cure – and the sense of shared goals helps motivate the difficult work.
Our “new” Duke medical team from 2011 to the present were represented of course, but it was especially joyful for me to see people directly involved as Sasha’s Doctors in 2009-10 – including Dr Patterson and Dr. McKeon from the Mayo Clinic, and Dr. Mikati at Duke – under much happier personal circumstances.
Many of the participants spoke privately about the present state of this still-rarely diagnosed disease in terms of isolation and loneliness – not only for patients and their families, but for themselves as well. They are making difficult decisions in a high risk environment with few peers who understand what they are facing or doing. But along with that is a sense of excitement and potentiality – “loftiness” was the word one person used. And the future was spoken of as a time of forging new connections, making new discoveries, and finding some joy. Awesome.
Collaboration Map of AE Working Group Members and others
Light of Sasha 