Organizations Filed Purposes:
THE AUTOIMMUNE ENCEPHALITIS ALLIANCE IMPROVES THE LIVES OF PATIENTS WITH AUTOIMMUNE ENCEPHALITIS BY MULTI-DISCIPLINARY, COLLARBORATIVE RESEARCH AND CLINICAL CARE AND BY CREATING A COMMUNITY OF PATIENTS AND CAREGIVERS SO THAT NO ONE FACES AUTOIMMUNE ENCEPHALITIS ALONE.
CREATE A COMMUNITY SO THAT NO ONE FACES AE ALONE; PROMOTING MEDICAL COLLABORATION.
CLINICAL CARE AND DOCTOR EDUCATION:THE AUTOIMMUNE ENCEPHALITIS ALLIANCE (AE ALLIANCE) CONTINUES TO BE A PREMIER SOURCE WORLDWIDE FOR PATIENTS AND CAREGIVERS SEEKING PHYSICIANS WHO HAVE EXPERIENCE TREATING AE. SEVERAL OTHER ORGANIZATIONS REFER PATIENTS TO OUR CLINICIANS NETWORK. WE HAVE ADDED 32 DOCTORS TO THIS NETWORK IN 2019, AN INCREASE OF 24% THE PHYSICIANS ON OUR CLINICIANS NETWORK ARE OFTEN INVITED TO PARTICIPATE IN RESEARCH AND CLINICAL TRIAL STUDIES, THEREBY STIMULATING COLLABORATION IN THIS RARE DISEASE SPACE.AE ALLIANCE CO-ORGANIZED THE SYMPOSIUM, 'THE BRIDGE BETWEEN NEUROLOGY AND PSYCHIATRY' IN APRIL 2019, 120 PHYSICIANS FROM VARIOUS DISCIPLINES ATTENDED THIS CONFERENCE. DR. DALMAU, WHO DISCOVERED THE FIRST, SPECIFIC CELL SURFACE ANTIBODY (ANTI-NMDA-RECEPTOR) ASSOCIATED WITH TREATMENT RESPONSIVE TO AE, WAS THE KEYNOTE SPEAKER AT THIS CONFERENCE.AE ALLIANCE PARTICIPATED IN A STUDY LED BY DR. VENKATESAN AT JOHNS HOPKINS UNIVERSITY IN COLLABORATION WITH DR. YESHOKUMAR AT THE ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI, TO BETTER UNDERSTAND THE PERSISTENT SYMPTOMS IN PEOPLE AFFECTED BY ENCEPHALITIS MAY LEAD TO THE DEVELOPMENT OF TARGETED THERAPEUTIC AND REHABILITATION MEASURES TO ENHANCE FUNCTION AND QUALITY OF LIFE.AE ALLIANCE PARTICIPATED IN A STUDY OF LANGUAGE LED BY DR. ANUSHA YEKOSHUMAR AND MEDICAL STUDENT KELSEY MARTIN AT THE ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI. THE GOAL OF THIS STUDY WAS TO LEARN MORE ABOUT THE CHANGES THAT OCCUR IN LANGUAGE DURING AND AFTER AE, AS WELL AS HOW THEY MIGHT CORRELATE WITH CERTAIN CLINICAL SIGNS AND RELEVANT BRAIN AREAS, THEREBY PROVIDING FURTHER INSIGHTS INTO THE CONNECTIONS AND DIFFERENCES BETWEEN AE AND PRIMARY PSYCHIATRIC DISEASES.AE ALLIANCE REACHED ALMOST 2,500 PSYCHIATRISTS IN FIVE STATES WITH THE CAMPAIGN 'PSYCHIATRY PLAYS A PIVOTAL ROLE IN AE'. AE MIMICS MANY PSYCHIATRIC DISORDERS AND BY PROVIDING PSYCHIATRISTS WITH RELEVANT SCIENTIFIC LITERATURE, VETTED BY OUR MEDICAL ADVISORY BOARD, ABOUT AE, WE PROVIDED PSYCHIATRISTS WITH THE TOOLS NEEDED TO ACCURATELY DIAGNOSE AE.
PATIENT ADVOCACY AND PATIENT SUPPORT:AE ALLIANCE SUCCESSFULLY RAN AN AE AWARENESS CAMPAIGN AIMED AT THE GENERAL PUBLIC FOR WORLD ENCEPHALITIS DAY 2019, REACHING ALMOST 90,000 PEOPLE WITH OUR AE AWARENESS CARD.IN MARCH AE ALLIANCE HOSTED A LUNCHEON FOR FAMILY MEMBERS AND PATIENTS TO SHARE EXPERIENCES DURING THE FLORENCE FORTH WEEKEND. WE HAD DR. HEATHER VAN MATER SPEAK AND ANSWER QUESTIONS IN A WELL-ATTENDED SESSION, WHILE CHILDREN WITH AE AND THEIR SIBLINGS LEARNED MORE ON COPING MECHANISMS IN A PLAYFUL WORKSHOP LED BY DR. REBECCA SADUN.MULTIPLE DAILY INQUIRIES FROM PATIENTS AND CAREGIVERS VIA EMAIL WERE ANSWERED, PROVIDING THEM WITH TOOLS TO CONTINUE BATTLE THIS DISEASE. PEER-TO-PEER CONNECTIONS WERE MADE THROUGHOUT THE YEAR AND OUR ONLINE AE COMMUNITY GREW TO 553 MEMBERS, AN INCREASE OF 203%, EXCHANGING EXPERIENCES, KNOWLEDGE AND INFORMATION.OUR E-NEWSLETTER, CONTAINING SUMMARIES OF RECENT MEDICAL JOURNAL PUBLICATIONS AND BLOGS WERE SENT MONTHLY TO OUR MAILING LIST OF OVER 2,100 PATIENTS, CAREGIVERS AND PHYSICIANS. OUR FACEBOOK PAGE IS FOLLOWED BY 5,912 PEOPLE, KEEPING UP-TO-DATE WITH OUR LATEST BLOGS AND RESOURCES.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Carrie Painter | TREASURER | 10 | $0 |
| Leslie G Mcdow | SECRETARY | 10 | $0 |
| William C Mcdow Iii | CHAIR | 12 | $0 |
| Anusha Yeshokumar | DIRECTOR (FROM 1/14/2019) | 1 | $0 |
| Heather Van Mater | DIRECTOR (FROM 1/14/2019) | 1 | $0 |
| Bill Gavigan | DIRECTOR (FROM 1/29/2019) | 1 | $0 |
| Robert Given | DIRECTOR | 1 | $0 |
| Ed Arditte | DIRECTOR | 1 | $0 |
| Barbara Arditte | DIRECTOR | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202041619349300004_public.xml