Autoimmune Encephalitis Alliance Inc.
Autoimmune Encephalitis Alliance Inc.
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About this organization
Mission
CREATE A COMMUNITY SO THAT NO ONE FACES AE ALONE; PROMOTING MEDICAL COLLABORATION.
About
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.
Interesting data from their 2020 990 filing
The filing documents outline the non-profit's mission as “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.”.
When outlining the tasks it performs, they were referred to as: “Create a community so that no one faces ae alone; promoting medical collaboration.”.
- The non-profit's reported state of operation is NC as per legal requirements.
- The filing reveals that the address of the non-profit in 2020 is 920 URBAN AVE, DURHAM, NC, 27701.
- As of 2020, the non-profit has 2 employees reported on their 990 form.
- Is not a private foundation.
- Expenses are between $100,000 and $250,000.
- Revenue is between $100,000 and $250,000.
- Revenue less expenses is $52,697.
- The organization has 9 independent voting members.
- The organization was formed in 2012.
- The organization pays $46,973 in salary, compensation, and benefits to its employees.
- The organization pays $4,418 in fundraising expenses.