Siegel Rare Neuroimmune Association

TO SUPPORT AND ADVOCATE FOR INDIVIDUALS AND THEIR FAMILIES DIAGNOSED WITH RARE NEUROIMMUNE DISORDERS OF THE CENTRAL NERVOUS SYSTEM; TO PROMOTE AWARENESS AND TO EMPOWER PATIENTS, FAMILIES, CLINICIANS AND SCIENTISTS THROUGH EDUCATION PROGRAMS AND PUBLICATIONS AND TO ADVANCE THE SCIENTIFIC UNDERSTANDING OF AND THERAPY DEVELOPMENT FOR THESE RARE DISORDERS BY SUPPORTING THE TRAINING OF CLINICIANS-SCIENTISTS DEDICATED TO THESE RARE DISORDERS AND BY SUPPORTING BASIC AND CLINICAL RESEARCH. OUR GOAL IS TO IMPROVE THE QUALITY OF LIFE OF INDIVIDUALS WITH RARE NEUROIMMUNE DISORDERS.

THE SRNA MAINTAINS AN EXTENSIVE WEBSITE WITH EDUCATIONAL MATERIALS THAT INCLUDE SPECIFIC SYMPTOM AND CONDITION INFORMATION FOR RARE NEUROIMMUNOLOGIC DISEASES; PODCASTS WITH PHYSICIANS, BLOGS WRITTEN BY MEDICAL PROFESSIONALS AS WELL AS SRNA MEMBERS; AND ARCHIVES OF ALL PAST MAGAZINES. THE WEBSITE ALSO FACILITATES SUPPORT BETWEEN PATIENTS AND THEIR FAMILIES THROUGH SUPPORT GROUPS AND SOCIAL MEDIA CONTACTS. IN ADDITION, THE SRNA HOLDS AN ANNUAL SYMPOSIUM TO BRING TOGETHER INDIVIDUALS DIAGNOSED WITH RARE NEUROIMMUNE DISORDERS AND THE CLINICIANS AND RESEARCHERS THAT FOCUS ON THESE DISORDERS. THIS EVENT IS THE ONLY ONE OF ITS KIND.THE SRNA PUBLISHES A MAGAZINE AND AN ANNUAL REPORT THAT IS DISTRIBUTED TO ITS MEMBERSHIP. THE MAGAZINES CONTAIN ARTICLES WRITTEN BY PHYSICIANS THAT FOCUS ON RARE NEUROIMMUNOLOGIC DISORDERS AS WELL AS THE MOST EFFECTIVE TREATMENTS FOR SYMPTOM MANAGEMENT. REGULAR UPDATES THAT RELATE INFORMATION ABOUT NEW TREATMENTS AND RESEARCH ARE ALSO INCLUDED. OUR GOAL IS TO CONTINUE PROVIDING THIS VALUABLE RESOURCE TO OUR COMMUNITY FOR MANY YEARS TO COME. IN 2021, OUR PROGRAMS CONTINUED TO BE OFFERED UNDER OUR COVID PROTOCOLS WITH EXCLUSIVELY ONLINE PUBLICATIONS AND ADDED NEW PROGRAMMING THAT INCLUDED Q&A WITH MEDICAL PROFESSIONALS ABOUT COVID AND IT'S IMPACT ON THOSE WITH RARE NEUROIMMUNE DISORDERS.

THE SRNA PARTNERS WITH THE CENTER FOR COURAGEOUS KIDS (CCK) IN SCOTTSVILLE, KY TO HOLD AN ANNUAL SUMMER CAMP FOR CHILDREN (AGES 5 - 17) AND THEIR FAMILIES WHO HAVE BEEN IMPACTED BY THESE RARE NEUROIMMUNOLOGIC DISORDERS. THE ENTIRE WEEK OF CAMP IS OFFERED TO THESE CHILDREN AND THEIR FAMILIES FREE OF CHARGE AND ALLOWS THESE CHILDREN TO EXPERIENCE THE JOYS OF CAMP AND CONNECT WITH OTHERS WHO EXPERIENCE THE SAME SYMPTOMS AND CONDITIONS. IN 2021, DUE TO COVID, WE WERE UNABLE TO HOLD CAMP IN-PERSON, BUT HELD A VIRTUAL VERSION THAT STILL PROMOTED EDUCATION, SUPPORT AND FUN.

THE SRNA PROVIDES RESEARCH GRANTS TO MEDICAL AND OTHER INSTITUTIONS FOR WORK ON UNDERSTANDING OF TREATMENTS FOR THESE NEUROIMMUNOLOGIC DISORDERS. THE SRNA'S JAMES T. LUBIN FELLOWSHIP PROGRAM SUPPORTS THE POST-RESIDENCY TRAINING OF A CLINICIAN AT AN ACADEMIC MEDICAL FACILITY, WHO IS COMMITTED TO A CAREER IN ACADEMIC MEDICINE WITH A SPECIALIZATION IN RARE NEUROIMMUNOLOGIC DISEASES AND RESEARCH. THE SRNA MAINTAINS A REGISTRY TO UNDERSTAND PEOPLE'S EXPERIENCES WITH RARE NEUROIMMUNE DISORDERS. THE SRNA IS ALSO SUPPORTING THE FIRST STUDY TO INVESTIGATE THE SAFETY OF THE TRANSPLANTATION OF HUMAN GLIAL RESTRICTED PROGENITOR CELLS IN TRANSVERSE MYELITIS AND THE PROGRESS GRANT FOR NMOSD.