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 241 CLINICIANS PARTICIPATING BY 2021 YEAR.DURING THE 2021 FISCAL YEAR THE AE ALLIANCE SUPPORTED 3 SIGNIFICANT RESEARCH STUDIES OR CLINICAL TRIALS, PROVIDING PATIENT MATERIALS OR OTHER RESOURCES ENABLING THE STUDIES TO BE COMPLETED AND/OR PUBLISHED TO THE AE PHYSICIAN AND PATIENT COMMUNITIES.THE AE ALLIANCE MEDICAL ADVISORY BOARD (MAB) INCLUDES 17 EXPERTS ON AUTOIMMUNE ENCEPHALITIS (AE) FROM A VARIETY OF KEY DISCIPLINES - NEUROLOGY, RHEUMATOLOGY, AND PSYCHIATRY. DURING 2021 THE GROUP FOCUSED LARGELY ON THE UPDATING AND/OR EXPANSION OF MEDICAL INFORMATION INCLUDED IN THE AE ALLIANCE'S NEW WEBSITE REDESIGN IMPLEMENTED DURING THE YEAR AND THE OFFICIAL ROLL-OUT OF THE AE COMMUNITY RESEARCH GRANT PROGRAM WHICH AWARDED ITS FIRST THREE SEED GRANTS DURING THE FISCAL YEAR. DURING 2021, THE AE ALLIANCE CONTINUED ITS SIGNATURE FUNDRAISING EFFORT FOR AE RESEARCH, THE RESEARCH NETWORK, RAISING ANOTHER $30K OF SEED FUNDING FOR ANOTHER ROUND OF RESEARCH GRANTS IN THE FOLLOWING SPRING. IN APRIL OF 2021 THE AE ALLIANCE UNDERTOOK A COLLABORATIVE EFFORT WITH ANOTHER NON-PROFIT, HESA, TO HOST A SYMPOSIUM FOR EXCHANGING IDEAS AND COLLABORATING ACROSS THE DISCIPLINES OF IMMUNOLOGY, NEUROLOGY, PSYCHIATRY, AND RHEUMATOLOGY. THE BUILDING BRIDGES SYMPOSIUM WAS FOCUSED ON HOW TO ENHANCE PATIENT CARE AND IMPROVE OUTCOMES FOR THOSE AFFECTED BY AE THROUGH PROMOTING A MULTIDISCIPLINARY APPROACH TO DIAGNOSIS, TREATMENT, AND RECOVERY.

PROGRAM 2: PATIENT SUPPORTAE ALLIANCE WAS ONE OF FIVE NON-PROFIT ORGANIZATIONS IN THE WORLD ENCEPHALITIS DAY ALLIANCE, CO-HOSTING A VIRTUAL CONFERENCE FOR AE PATIENTS IN FEBRUARY OF 2021. THE CONFERENCE WAS HELD FOR ENCEPHALITIS SURVIVORS AND CARETAKERS AND INCLUDED PRESENTATIONS FROM EXPERTS IN THE FIELDS OF NEUROLOGY, PSYCHIATRY, NEUROIMMUNOLOGY, AND AUXILIARY SUPPORT DISCIPLINES. DURING THE 2021 FISCAL YEAR THE AE ALLIANCE EXPANDED ITS PATIENT CARE EFFORTS BY ADDING ANOTHER REGIONAL SUPPORT GROUP IN THE WEST. WITH FOUR REGIONAL SUPPORT GROUPS IN PLACE, 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. NEW AEA PROGRAMS WERE ROLLED OUT DURING THE YEAR THROUGH THESE REGIONAL SUPPORT GROUPS.IN SEPTEMBER THE AE ALLIANCE HELD ITS ANNUAL AE FAMILY DAY PROGRAM VIRTUALLY TO ALL PATIENTS AND CAREGIVERS IN OUR AE COMMUNITY. THE MORNING PROGRAMMING INCLUDED PHYSICIAN PRESENTATIONS, PATIENT STORIES, POLITICAL ADVOCACY UPDATES, AND PATIENT AND PHYSICIAN SERVICE AWARDS FROM OUR PARTNER, EUROIMMUN. THE AFTERNOON INCLUDED HELPFUL WORKSHOPS ON JOURNALING, MINDFULNESS, BRAIN RECOVERY, AND ART THERAPY FOR PATIENTS RECOVERING FROM AE.IN OCTOBER THE AE ALLIANCE LAUNCHED A NEW PROGRAM FOCUS UNDER THE UMBRELLA OF LIVING WITH AE. THE 2021 OFFERING FOCUSED ON HEALTH CARE COACHING THROUGH A PARTNERSHIP WITH POE WELLNESS SOLUTIONS TO PROVIDE A 12 WEEK GROUP HEALTH COACH PROGRAM (REFUEL YOU) FOR AE CAREGIVERS AND A PILOT 6 WEEK PROGRAM OF INDIVIDUALIZED HEALTH COACHING TO PATIENTS RECOVERING FROM AE. THE PROGRAM IS THE FIRST OF AN ONGOING FOCUS ON HEALTH AND WELLNESS THROUGH HANDS ON SUPPORT TO AE PATIENTS AND CAREGIVERS ADAPTING TO LIFE IN THE AFTERMATH OF AN AE DIAGNOSIS AND TREATMENT.

PROGRAM 3: AE DISEASE AWARENESS AND ADVOCACYIN JUNE OF 2021 THE ALLIANCE PUBLISHED AN EXPANSIVE NEWSLETTER ON THE LATEST DEVELOPMENTS IN RESEARCH. THE INTENT OF THIS NEWSLETTER WAS TO PROVIDE UPDATES ON RESEARCH STUDIES, CLINICAL TRIALS, AND CLINICAL APPROACHES TO DISEASE MANAGEMENT AND CARE. EACH YEAR SINCE ITS INCEPTION IN 2012, THE AE ALLIANCE HAS HELD 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 2021 THE AE ALLIANCE EXPANDED ITS EFFORTS BY ROLLING OUT A VIRTUAL RACE OPTION OVER THE WEEKEND OF MARCH 5TH THROUGH 7TH ALLOWING FOR PATIENTS, CAREGIVERS, AND THEIR SUPPORT NETWORKS TO PARTICIPATE FROM ANYWHERE IN THE WORLD. FLORENCE FORTH IS AN ANNUAL RACE IN HONOR OF SIX YEAR-OLD FLORENCE MCDOW WHO LOST HER BATTLE TO AE IN 2012. IN JULY OF 2021, THE AE ALLIANCE AGAIN PARTICIPATED WITH THE EVERYLIFE FOUNDATION'S ADVOCACY COALITION, RDLA, TO BRING RARE DISEASE ISSUES TO THE FOREFRONT WITH OUR STATE LEGISLATORS IN OUR ORIGIN STATE OF NC. KEY PATIENT ADVOCATES AND NON-PROFIT SUPPORT GROUPS LIKE THE AE ALLIANCE MET WITH LEGISLATORS VIRTUALLY TO ADVOCATE FOR KEY ISSUES IMPACTING THE RARE DISEASE COMMUNITY. THE AE ALLIANCE SOUGHT TO EDUCATE THE LEGISLATORS ON THE RARE DISEASE OF AUTOIMMUNE ENCEPHALITIS AND ASK THEM TO JOIN THE RARE DISEASE CONGRESSIONAL CAUCUS.IN OCTOBER AND NOVEMBER OF 2021 THE AE ALLIANCE STEPPED UP ITS TRAINING OF NEW ADVOCATES IN ITS SECOND INSTALLATION OF THE AE ON THE HILL PROGRAM. THE ALLIANCE PARTNERED WITH LIVING PROOF ADVOCACY TO PROVIDE INTERESTED PATIENTS AND CAREGIVERS A THREE SESSION TRAINING PROGRAM ON CRAFTING THEIR PERSONAL AE STORIES. PARTICIPANTS WERE GIVEN THE OPPORTUNITY TO GET INDIVIDUALIZED SUPPORT IN CRAFTING THEIR ADVOCACY MESSAGE TO APPROPRIATE AUDIENCES BASED ON THEIR PERSONAL INTERESTS. THE PROGRAM CULMINATED IN A NOVEMBER CAPSTONE PROJECT IN WHICH EACH PARTICIPANT DELIVERED A THREE MINUTE ADVOCACY PITCH ON VIDEO.