2024-10-10T09:34:47-07:00 2023-12-31 990 2023-01-01 911780467 SIEGEL RARE NEUROIMMUNE ASSOCIATION SIEG 8553803330 1787 Sutter Parkway Powell OH 43065 Linda Malecky Treasurer 2154999335 2024-10-10 1 2023 2024-10-15 13:58:12Z Sanford J Siegel 1787 Sutter Parkway Powell OH 43065 1270268 0 X www.wearesrna.org X 1996 WA 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. 16 11 7 100 0 1208273 1222107 27714 0 -17636 48161 0 0 1218351 1270268 87663 105942 0 0 554092 602681 0 0 51558 454560 516598 1096315 1225221 122036 45047 1636191 1723037 85987 127786 1550204 1595251 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. 0 0 780050 0 0 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, peer connect programs 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 an annual report that is distributed to its membership and details accomplishments and financial information. Regular updates that relate information about new treatments and research are also included. SRNA introduced the Online Learning Program, an initiative that offers online micro-courses specifically tailored for individuals with ADEM, AFM, MOGAD, NMOSD, ON, and TM, reflecting our ongoing commitment to providing essential knowledge and support to those impacted by these conditions. Our goal is to continue providing this valuable resource to our community for many years to come. 108190 0 16837 The SRNA partners with Morgans Wonderland Camp to hold an annual summer camp for children (ages 5 - 17) and their families who have been impacted by 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. 197014 105942 182664 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. 0 0 0 1085254 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 0 0 1 7 1 0 0 0 0 0 0 0 0 X 16 11 0 0 0 0 1 0 0 1 0 0 1 1 1 1 0 0 1 1 0 AK AL AR CA CO CT DC FL GA HI IL KS KY MA MD ME MI MN MS NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X X X Linda Malecky 2154999335 1787 Sutter Parkway Powell OH 43065 X Gabrielle deFiebre Director of Research and Programs 40 0 X X 103907 0 5195 Chitra Krishnan Executive Director 30.00 0 X X X 97250 0 4863 Lana Harder Director 5 X 0 0 0 Sanford J Siegel President 20 0 X X 0 0 0 Deborah Capen Secretary 20 0 X X 0 0 0 Linda Malecky Treasurer, Vice President 20 0 X X 0 0 0 Bruce L Downey Director 3 0 X 0 0 0 Benjamin M Greenberg MD Director 5 0 X 0 0 0 Douglas A Kerr MD PHD Director 5 0 X 0 0 0 Carlos A Pardo-Villamizar MD Director 5 0 X 0 0 0 Barbara Sattler Director 5 0 X 0 0 0 Jason Robbins Director 5 0 X 0 0 0 Peter C Johnson Director 3 0 X 0 0 0 Dennis Wolfe Director 3 0 X 0 0 0 James T Lubin Executive Committee Member 20 0 X X 0 0 0 Dave Evans Director 3 0 X 0 0 0 Michael Levy Director 5 0 X 0 0 0 201157 0 10058 2 0 0 0 0 0 0 0 0 0 1222107 50625 1222107 0 48161 0 0 48161 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1270268 0 0 48161 X 105942 105942 0 0 0 0 0 0 211214 179882 15666 15666 0 0 0 0 295201 271139 8902 15160 14760 13557 445 758 41522 37013 1993 2516 39984 35642 1919 2423 11500 0 11500 0 94196 85718 0 8478 2080 0 2080 0 34354 25841 6350 2163 10337 10249 88 0 0 0 0 0 42371 42371 0 0 0 0 0 0 0 0 0 0 4107 0 4107 0 6404 0 6404 0 EDUCATION AND SUPPORT, INC. CAMP 277900 277900 0 0 LICENSES AND FEES INC. STATE REGISTRATIONS 14733 0 14733 0 BANK FEES 14222 0 14222 0 PRINTING AND POSTAGE 4394 0 0 4394 1225221 1085254 88409 51558 0 107820 1469263 1532885 13694 54862 0 0 0 0 0 0 0 0 0 0 0 0 27580 16776 11425 10804 141809 16666 0 0 0 0 1636191 1723037 30222 68881 0 0 55765 58905 0 0 0 0 0 0 0 0 0 0 85987 127786 X 1252167 1253653 298037 341598 1550204 1595251 1636191 1723037 45047 0 0 0 0 0 X 0 1 1 0 X 879153 656766 1238205 1208273 1222107 5204504 0 41572 166287 27714 0 235573 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 879153 698338 1404492 1235987 1222107 5440077 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 5440077 6991 -11213 11399 9866 48161 65204 0 0 0 0 0 0 6991 -11213 11399 9866 48161 65204 0 0 0 0 0 0 0 0 0 0 0 0 886144 687125 1415891 1245853 1270268 5505281 0.98816 0.99713 0.01184 0.00287 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 0 0 0 0 0 27580 0 16776 10804 0 0 0 0 10804 1270268 0 0 0 0 0 1270268 0 0 0 1270268 1225221 0 0 0 0 0 1225221 0 0 0 1225221 1 MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT ST BOSTON MA 02114 041564655 501(C)3 40000 0 CASH Acquired samples of CSF and blood from TM,MS,NMO,MOG patients and healthy controls. Using artificially produced exosomes in culture from cell lines , she successfully improved on a protocol to purify and characterize exosomes. These exosomes are within a specific size range and contain the markers of exosomes (tetraspanins). From MOG-expressing HEK cells, she can identify MOG protein within the exosomes and from AQP4-expressing HEK cells, she can identify AQP4 on the membranes of exosomes. Johns Hopkins Univ School of Medicine 900 N Wolfe St BALTIMORE MD 21287 520595110 170 40000 0 CASH 0 Fellowship award for salary, benefits and supplies for Fellow training in the clinical treatment of and research pertaining to rare neuroiummune diseases 1 1 Schedule I, Part I, Line 2 Grant recipients are required to submit progress reports that summarize their work using the Grantors funds at 6, 12, 18 and 24 months (depending on the length of the grant) which are reviewed by the Grantee to make sure the project and funds expended are in line with the stated purpose. A final report is required with the results of the project and a full financial accounting. Grantees also report results to the SRNA community through podcast, blogs, etc. X 1 50625 FMV 0 0 0 0 Form 990, Part VI, Section A, Line 6 THE SRNA MAINTAINS NO-COST MEMBERSHIPS FOR PEOPLE IN OUR COMMUNITY. THE MEMBERSHIPS DO NOT INCLUDE VOTING RIGHTS Form 990, Part VI, Section B, Line 11b 990 REVIEWED BY OFFICERS AND TIED TO INDEPENDENT AUDIT AND DISTRIBUTED TO ALL BOARD MEMBERS Form 990, Part VI, Section B, Line 12c BOARD REVIEW OF CONFLICT PER POLICY Form 990, Part VI, Section B, Line 15 COMPENSATION FOR EXECUTIVE DIRECTOR AND KEY EMPLOYEES - NUMEROUS ORGANIZATIONS OF SIMILAR SIZE AND PROGRAM CRITERIA WERE CONTACTED AND INTERVIEWED REGARDING APPROPRIATE COMPENSATION FOR EXECUTIVE DIRECTOR. COMPENSATION PROCESS FOR KEY EMPLOYEES IS TO DO A MARKET SURVEY OF SIMILAR ORGANIZATIONS ADVERTISING FOR POSITIONS WITH SIMILAR RESPONSIBILITIES. Form 990, Part VI, Section C, Line 19 THE GOVERNING DOCUMENTS AND CONFLICT OF INTEREST POLICY ARE NOT PUBLICLY AVAILABLE. 990S, INCLUDING FINANCIAL STATEMENTS, ARE POSTED ON THE SRNA WEBSITE, ARE AVAILABLE BY REQUEST, AND ARE ALSO AVAILABLE ON GUIDESTAR. Form 990, Part IX, Line 11g AMOUNT INCLUDES PAYMENTS TO CREATIVE DIRECTOR FOR DESIGN, CONTENT AND INFORMATION TECHNOLOGY CONSULTING