Autoimmune Encephalitis Alliance Inc

TO SUPPORT ALL MEMBERS OF THE AE COMMUNITY SO NO ONE FACES AE ALONE.

PROGRAM 1: RESEARCH, CLINICAL CARE AND PHYSICIAN EDUCATIONTHE AUTOIMMUNE ENCEPHALITIS ALLIANCE (AE ALLIANCE) CLINICIANS NETWORK CONTINUES TO BE A PREMIER SOURCE WORLDWIDE FOR PATIENTS AND CAREGIVERS SEEKING PHYSICIANS WHO HAVE EXPERIENCE TREATING AE. THE PHYSICIANS IN OUR CLINICIANS NETWORK INCLUDE SOME OF THE MOST RENOWNED EXPERTS IN THE FIELD OF AUTOIMMUNE ENCEPHALITIS, AND FREQUENTLY PARTICIPATE IN RESEARCH, CONDUCT CLINICAL TRIAL STUDIES, AND SPEAK IN NATIONAL FORUMS ABOUT THIS RARE DISEASE. THE NETWORK IS THE LARGEST NATIONAL REGISTRY OF PHYSICIANS TREATING AE - A TOTAL OF 270 CLINICIANS PARTICIPATING BY 2022 YEAR.DURING THE 2022 FISCAL YEAR THE AE ALLIANCE SUPPORTED 1 SIGNIFICANT RESEARCH CLINICAL TRIAL, PROVIDING PATIENT MATERIALS OR OTHER RESOURCES ENABLING THE STUDIES TO BE COMPLETED AND/OR PUBLISHED TO THE AE PHYSICIAN AND PATIENT COMMUNITIES. IN ADDITION, THE AE ALLIANCE PARTNERED WITH UCB PHARMA IN AN LGI-1 PATIENT JOURNEY MARKET RESEARCH PROJECT TO GATHER DATA ABOUT PATIENT EXPERIENCES WITH THIS TYPE OF AE.THE AE ALLIANCE MEDICAL ADVISORY BOARD (MAB) INCLUDES EXPERTS ON AUTOIMMUNE ENCEPHALITIS (AE) FROM A VARIETY OF KEY DISCIPLINES - NEUROLOGY, RHEUMATOLOGY, AND PSYCHIATRY. DURING 2022 THE GROUP FOCUSED LARGELY ON PATIENT AND PHYSICIAN EDUCATION AND THE AE COMMUNITY RESEARCH GRANT PROGRAM WHICH AWARDED ITS SECOND YEAR OF SEED GRANTS ADVANCING RESEARCH IN THE FIELD OF AUTOIMMUNE ENCEPHALITIS. DURING 2022, THE AE ALLIANCE CONTINUED ITS SIGNATURE FUNDRAISING EFFORT FOR AE RESEARCH, THE RESEARCH NETWORK, RAISING ANOTHER $20K OF SEED FUNDING FOR THE 2023 ROUND OF RESEARCH GRANTS TO BE AWARDED IN THE SPRING OF THAT YEAR.

PROGRAM 2: PATIENT SUPPORTDURING THE 2022 FISCAL YEAR THE AE ALLIANCE CONTINUED TO SERVE THE PATIENT COMMUNITY THROUGH FOUR PRIMARY REGIONAL SUPPORT GROUPS. THE AEA FOCUSED ON PROVIDING PATIENTS AND CAREGIVERS THE OPPORTUNITY TO LEARN FROM ONE ANOTHER, SHARE EXPERIENCES, AND HEAR FROM GUEST EXPERTS IN THE FIELD OF AE. SIGNATURE AEA PROGRAMS WERE OFFERED DURING THE YEAR THROUGH THESE REGIONAL SUPPORT GROUPS.AS THE 2022 YEAR UNFOLDED, THE AE ALLIANCE CONDUCTED A SURVEY OF THE PATIENT AND CAREGIVER COMMUNITY REGARDING HOW WE BEST SERVE THEIR NEEDS. AS A RESULT OF THIS EFFORT, THE ALLIANCE REFINED THE FORMAT FOR SUPPORT GROUP MEETINGS AND EXPANDED SUPPORT GROUP LEADERSHIP TO INVOLVE MORE AE COMMUNITY MEMBERS. THESE REFINEMENTS WERE REFLECTED IN THE ONGOING SUPPORT GROUP MEETINGS THROUGHOUT THE YEAR.DURING THE YEAR, THE AE ALLIANCE HELD ITS ANNUAL AE FAMILY DAY PROGRAM VIRTUALLY TO ALL PATIENTS AND CAREGIVERS IN OUR AE COMMUNITY. PROGRAMMING FOCUSED ON PHYSICIAN PRESENTATIONS, PATIENT STORIES, POLITICAL ADVOCACY UPDATES, AND PATIENT AND PHYSICIAN SERVICE AWARDS FROM OUR PARTNER, EUROIMMUN. THE 2022 FOCUS OF OUR "LIVING WITH AE" PROGRAMMING WAS ON MINDFULNESS AND THANKFULNESS. PATIENTS AND CAREGIVERS WERE ENCOURAGED TO DO A 31 DAY THANKFULNESS CHALLENGE IN WHICH EACH DAY THEY IDENTIFIED WAYS THEY WERE THANKFUL AND TOOK OVERT STEPS TO DEMONSTRATE THEIR THANKFULNESS TO OTHERS.

PROGRAM 3: AE DISEASE AWARENESS AND ADVOCACYEACH YEAR SINCE ITS INCEPTION IN 2012, THE AE ALLIANCE HAS SPONSORED THE FLORENCE FORTH ROAD RACE IN DURHAM, NC NOT ONLY TO RAISE FUNDS FOR SUPPORT SERVICES TO THE AE COMMUNITY, BUT TO EXPAND AWARENESS OF THE DISEASE. IN 2022 THE AE ALLIANCE CELEBRATED ITS 10TH ANNIVERSARY WITH A SPECIAL 10TH YEAR FOCUS ON THE FLORENCE FORTH RACE. IN-PERSON AS WELL AS VIRTUAL RACE PARTICIPANTS PARTICIPATED OVER THE FIRST WEEKEND OF MARCH IN THIS MILESTONE YEAR RACE. FLORENCE FORTH IS AN ANNUAL RACE IN HONOR OF SIX YEAR-OLD FLORENCE MCDOW WHO LOST HER BATTLE TO AE IN 2012. THE AE ON THE HILL PROGRAMMING EFFORTS FOR 2022 WAS A CHALLENGE TO THE AEA COMMUNITY TO DEVELOP A SIX WORD REASON ABOUT WHY THEY ADVOCATE FOR AE. THESE SIX WORD STATEMENTS WERE INCLUDED IN SOCIAL MEDIA POSTS, OUR WEBSITE, AND THROUGH OUR ADVOCACY PROGRAM PARTNER, LIVING PROOF ADVOCACY.