2025-11-10T15:31:23-07:00 2024-12-31 990 2024-01-01 911780467 SIEGEL RARE NEUROIMMUNE ASSOCIATION SIEG 8553803330 1787 Sutter Parkway Powell OH 43065 Linda Malecky Treasurer 2154999335 2025-11-10 1 2024 2025-03-06 01:10:19Z Sanford Siegel 1787 Sutter Parkway Powell OH 43065 1493618 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 8 100 0 0 1222107 1399452 0 0 48161 92764 0 1402 1270268 1493618 105942 177374 0 0 602681 735069 0 0 125513 516598 702434 1225221 1614877 45047 -121259 1723037 1638076 127786 164084 1595251 1473992 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 1029859 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. 132570 0 84349 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. 223887 177374 267237 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 1386316 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 1 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 8 1 0 0 0 0 1 1 0 0 0 X 16 11 0 0 0 0 1 0 0 1 0 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 VA WA WI WV X X X Linda Malecky 2154999335 1787 Sutter Parkway Powell OH 43065 Chitra Krishnan Executive Director 40 0 X X X X 136560 0 6828 Gabrielle deFiebre Director of Research and Programs 40 0 X 111300 0 5565 Lana Harder Director 5 0 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 8 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 247860 0 12393 2 0 0 0 0 0 0 0 0 0 1399452 107707 1399452 0 92764 0 0 92764 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1402 1402 0 0 1402 1493618 1402 0 92764 177374 177374 0 0 0 0 0 0 247860 216246 15807 15807 0 0 0 0 363851 335643 14104 14104 30586 27594 1496 1496 40840 36846 1997 1997 51932 46854 2539 2539 12250 0 12250 0 104237 94624 0 9613 799 0 758 41 30871 27549 1464 1858 20736 19656 0 1080 0 0 0 0 155621 155621 0 0 5346 0 5346 0 7111 0 7111 0 Bank Fees 24051 0 24051 0 EDUCATION AND SUPPORT; CAMP 248309 248309 0 0 LICENSES AND FEES/STATE REG 16125 0 16125 0 FUNDRAISING EXPENSES 76978 0 0 76978 1614877 1386316 103048 125513 107820 168468 1532885 1420557 54862 39226 0 0 0 0 0 0 0 0 0 0 0 0 31947 22122 10804 9825 16666 1723037 1638076 68881 86472 0 0 58905 77612 0 0 0 0 0 0 0 0 0 0 127786 164084 X 1253653 1058304 341598 415688 1595251 1473992 1723037 1638076 -121259 0 0 0 0 0 X 0 1 1 0 X 656766 1238205 1208273 1222107 1399452 5724803 41572 166287 27714 0 0 235573 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 698338 1404492 1235987 1222107 1399452 5960376 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 5960376 -11213 11399 9866 48161 92764 150977 0 0 0 0 0 0 -11213 11399 9866 48161 92764 150977 0 0 0 0 0 0 0 0 0 0 1402 1402 687125 1415891 1245853 1270268 1493618 6112755 0.97507 0.98816 0.02470 0.01184 X Schedule A, Part III, Line 12 Credit card reward cash back RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 0 0 0 0 0 31947 0 22122 9825 0 0 0 0 9825 1493618 0 0 0 0 0 1493618 0 0 0 1493618 1614877 0 0 0 0 0 1614877 0 0 0 1614877 Europe (including Iceland and Greenland) 0 3 Program Services Consultants based in Europe performed design, social media planning, content development, and program development strategy 133954 0 3 133954 0 0 0 0 0 0 1 Johns Hopkins School of Medicine 900 N Wolfe St Baltimore MD 21287 520595110 170 40000 0 Fellowship award for salary, benefits and supplies for Fellow training in the clinical treatment of and research pertaining to rare neuroiummune diseases University of Utah 201 S Presidents Circle Room 416 Park Building Salt Lake City UT 84112 876000525 170 50000 0 Fellowship award for salary, benefits and supplies for Fellow training in the clinical treatment of and research pertaining to rare neuroimmune disorders and a second grant to study the Effects of Social Determinants of Health Factors in Transverse Myelitis:Epidemiology of the National Veterans Health Administration Population MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT ST BOSTON MA 02114 041564655 501(C)3 47500 0 Fellowship award for salary, benefits and supplies for Fellow training in the clinical treatment of and research pertaining to rare neuroiummune diseases and a second grant to investigate Headache and Eye Pain Associated with Rare Neuroimmune Disorders 1 2 Schedule I, Part I, Line 2 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 3 107707 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 NO INCLUDE VOTING RIGHTS Form 990, Part VI, Section A, Line 8b THE BOARD FINANCE COMMITTEE MEETS PERIODICALLY TO REVIEW FINANCIALS AND BUDGET PROPOSALS. THE COMMITTEE MAKES RECOMMENDATIONS TO THE BOARD FROM TIME TO TIME, BUT DOES NOT HAVE THE AUTHORITY TO ACT ON BEHALF OF THE BOARD OF DIRECTORS. 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