2026-09-21T22:32:25-06:00 2025-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990PF 2025-01-01 842291780 The Stiff Person Syndrome Research % Tara Zier STIF 7032182178 8621 Burdette Rd Bethesda MD 20817 TARA ZIER President 7032182178 2026-09-21 true JOHN MULLINS P01429307 2027706371 2026-09-21 2025 X X 1308542 X 533845 44292 578137 0 11400 24765 362117 111071 30217 539570 0 0 0 0 539570 0 0 38567 0 0 220076 97582 97582 72750 13614 72750 72750 1453 13375 13375 1021664 1124718 1124718 888 117 117 1257695 1308542 1308542 21808 38097 21808 38097 X 1217212 1265384 18675 5061 1235887 1270445 1257695 1308542 1235887 38567 1274454 4009 1270445 0 0 0 0 false false false false false false false false true MD true false true false false true httpsstiffperson.org THE FOUNDATION 7032182178 8621 Burdette Rd Bethesda MD 20817 false false false false false false false false false false false false false false false false false false false Tara Zier 8621 Burdette Rd Bethesda MD 20817 President 40.00 0 0 0 Jim Weiss 8621 Burdette Rd Bethesda MD 20817 Director 1.00 0 0 0 Lara Vujovic 8621 Burdette Rd Bethesda MD 20817 Secretary 1.00 0 0 0 Helena Zec 8621 Burdette Rd Bethesda MD 20817 Director 1.00 0 0 0 Vidyashankar Krishnan 8621 Burdette Rd Bethesda MD 20817 Treasurer 2.00 0 0 0 NONE 0 NONE Registry Development The SPS Global Registry allows researchers to study the natural history of SPS to better understand how the disease progresses over time 173074 Awareness & Connection SPSRF envisions a world where all people with Stiff Person Syndrome SPS receive a prompt diagnosis care and a cure 188306 Neurologist Awareness SPSRF convened leading SPS neurologists researchers and patient partners to support accurate SPS diagnosis 28445 0 1079723 86861 0 1166584 0 0 1166584 17499 1149085 57454 57454 57454 57454 57454 0 57454 13306 39310 52616 52616 52616 4838 TARA ZIER NONE X 0 0 14 44292 44292 44292 false false false false false false false false false false X X 1 Jim Weiss 405 Jamesborough Dr Pittsburgh PA 15238 60560 X 2 Larry Lowe 4256 Raleigh Rd Chesapeake VA 23321 14505 X 3 Mollie & John Baumer 1015 1st St Manhattan Beach CA 90266 50000 X 4 Tara Zier 8621 Burdette Rd Bethesda MD 20817 92086 X 5 Zimbrick of Madison 1601 West Bellaire Highway Madison WI 53713 8750 X 6 Arjun Kashmag Foundation 406 Jamesborough Dr Pittsburgh PA 15238 5000 X 7 Laurel Czajkowski 10009 Vanderbilt Cir Rockville MD 20850 5000 X 8 Elise M Ford 18 Goodwin Rd Kittery Point ME 03905 6000 X 9 Hartford Healthcare PO Box 5037 Hartford CT 061025037 5000 X 10 Kyverna Therapeutics Inc 5980 Horton St Emeryville CA 94608 72250 X 11 Joseph Lewy 61 Henshaw Ave Springfield NJ 07081 50000 X 12 Nancy OConnell and Raymond Wiacek 16 E Melrose St Chevy Chase MD 20815 5000 X 13 Lara Vujovic 381 Appleton St Arlington MA 02476 7800 X 14 Michael Dalakas 1101 Chestnut Street Floor 10 Philadelphia PA 19107 5000 X Accounting Fees 24765 0 0 0 Form 990PF-General Explanation Attachment 1 Program Services Building the Registry The SPS Global Registry alllows researchers to study the natural history of SPS to better understand how the disease progresses over time. The Registry serves as a pivotal resource to unite the global community, centralize data, and help advance SPSD research. It gives patients, clinicians, researchers, and industry the opportunity to learn from one another and work together to improve the lives of those living with SPS. In 2025, we launched the Registry with a dedicated communications campaign, including a new microsite, brochure, and outreach materials, and began actively enrolling patients worldwide. Form 990PF-General Explanation Attachment 2 Awareness The Stiff Person Syndrome Research Foundation envisions a world where all people with Stiff Person Syndrome SPS receive a prompt diagnosis, compassionate care, effective treatments, and a cure. We exist to raise awareness of SPS and to support research for better treatments and a cure for SPS while strengthening our community through education and collaboration. In 2025, we continued to raise awareness through our communication channels, including email, social media, and our website, and co-hosted the SPS Symposium, bringing together community members, clinicians, and researchers to advance understanding of SPS. Form 990PF-General Explanation Attachment 3 Neurologist Awareness In 2025, The Stiff Person Syndrome Research Foundation began convening leading SPS neurologists, researchers, and patient partners to develop evidence-based diagnostic criteria for Stiff Person Syndrome. This initiative aims to support earlier, more accurate diagnosis and appropriate treatment decisions. The diagnostic criteria will be broadly disseminated to neurologists worldwide. Money Market 117 117 1124718 1124718 Legal Fees 11400 0 0 0 Unrealized Loss 4009 Advertising & Marketing 684 0 0 0 Insurance 2108 0 0 0 Information Technology 19040 0 0 0 Office Expenses 8385 0 0 0 Other Prof Fees 362117 0 0 0