2025-10-15T18:56:35-04:00 2024-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990PF 2024-01-01 842291780 The Stiff Person Syndrome Research % Tara Zier STIF 7032182178 8621 Burdette Rd Bethesda MD 20817 TARA ZIER President 7032182178 2025-10-15 true true JOHN MULLINS P01429307 2027706371 2025-10-15 2024 2025-03-06 01:10:19Z X X 1257695 X 599140 16252 6291 621683 0 11401 20407 269825 30727 31739 364099 0 0 0 0 364099 0 0 257584 0 0 978469 220076 220076 21813 13614 13614 13614 500 1453 1453 1021664 1021664 888 888 207 1000989 1257695 1257695 22686 21808 22686 21808 X 714536 1217212 263767 18675 978303 1235887 1000989 1257695 978303 257584 1235887 1235887 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 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 24.00 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 1.00 0 0 0 NONE 0 NONE Registry Development SPSRF advanced its patient registry with NORD leading to a July 2025 launch for global SPS data collection and research 82296 Awareness & Connection Expanded awareness with new website SPS neurologist directory & a symposium of 350 people from 17 countries 51547 Clinician Education Enhanced clinician education and worked with experts to reduce diagnostic delays & improve care 33409 0 0 661890 0 661890 0 0 661890 9928 651962 32598 32598 32598 32598 32598 0 32598 45904 39310 85214 32598 32598 52616 0 52616 13306 39310 TARA ZIER NONE X 0 0 14 6291 6291 6291 false false false false false false false false false false X X 1 Brendan Harrison Cooney 315 S Kenmore Ave Elmhurst IL 60126 5000 X 2 Jim Weiss 405 Jamesborough Dr Pittsburgh PA 15238 10560 X 3 Jorge Rios 44340 Premier Plz Ste 200 Ashburn VA 20147 8057 X 4 Mollie & John Baumer 1015 1st St Manhattan Beach CA 90266 15500 X 5 Tara Zier 8621 Burdette Rd Bethesda MD 20817 57639 X 6 Zimbrick of Madison 1601 West Bellaire Highway Madison WI 53713 5000 X 7 Arjun Kashmag Foundation 406 Jamesborough Dr Pittsburgh PA 15238 5000 X 8 CME Group 20 S Wacker Drive Chicago IL 60606 7500 X 9 Donna Coffey 316 E 1st St Hinsdale IL 60521 14000 X 10 Mary C Dempsey & Kevin R Hitzeman 615 Wheat Ln Wood Dale IL 60191 10000 X 11 Christine Falkenberg 444 Prairie Path Ln Elmhurst IL 60126 5125 X 12 Michael Fox 1110 Pleasant St Oak Park IL 60302 12260 X 13 Jane Husnik 110 White Ash Dr Atlantic Beach NC 28512 5250 X 14 Joseph Linnen 1822 N Hudson Ave Chicago IL 60614 10000 X 15 Glenn Lowe 4256 Raleigh Rd Chesapeake VA 23321 14189 X 16 Paul Martino 372 S Kenilworth Ave Elmhurst IL 60126 5000 X 17 Sean Daniel Moore 3993 Clover Ln Dallas TX 75220 5575 X 18 Timothy J Patton 544 Detroit St Ann Arbor MI 48104 10000 X 19 PayPal Giving Fund 12501 Street NW Ste 1202 Washington DC 20005 34302 X 20 Robertos Ristorante & Pizzeria Inc 483 S Spring Rd Elmhurst IL 60126 10000 X 21 Martin Schultz 1320 Bonnie Glen Ln Glenview IL 60025 6755 X 22 Scully Insurance Group LLC 815 Commerce Drive Suite 240 Oak Brook IL 60523 5000 X 23 Peggy Scully Walden 1822 N Howe St Chicago IL 60614 5575 X 24 Jack Shannon 1801 W 103rd Chicago IL 60643 6250 X 25 Wanumetonomy Golf and Country Club 152 Browns Lane Middletown RI 02842 5282 X 26 Sue Wright 6765 Birchton Ct Dublin OH 43017 5000 X Accounting Fees 20407 0 0 0 Form 990PF-General Explanation Attachment 1 Program Services Building the Registry In 2024 The SPSRF continued development of the SPS International Patient Registry Natural History Study in partnership with the National Organization for Rare Disorders NORD. In 2024, we finalized the registry protocol, completed survey design and testing, and implemented key data privacy and compliance measures. This groundwork culminated in the successful global launch of the Registry in July 2025, providing a centralized platform for collecting standardized, patient-reported data to drive SPS research and improve clinical understanding. Form 990PF-General Explanation Attachment 2 Awareness In 2024, The SPSRF expanded its efforts to raise awareness and connect the SPS community through digital resources and global events. We launched a new website featuring a searchable directory of SPS-focused neurologists, an SPS literature library, and a downloadable patient resource guide. Our annual SPS Symposium brought together more than 350 attendees from 17 countries, fostering collaboration among patients, caregivers, clinicians, and researchers. Form 990PF-General Explanation Attachment 3 Neurologist Awareness In 2024, The SPSRF prioritized clinician education to improve early diagnosis and care for people living with SPS. We expanded our SPS-focused neurologist directory, supported the publication of new educational materials, and collaborated with experts to ensure up-to-date information reached both specialists and general neurologists. These efforts aimed to reduce diagnostic delays and improve access to knowledgeable care. Money Market 888 888 1021664 1021664 Legal Fees 11401 0 0 0 Other Assets 207 0 0 Advertising & Marketing 600 0 0 0 Insurance 1731 0 0 0 Information Technology 13743 0 0 0 Office Expenses 15665 0 0 0 Unrealized Gains 6291 0 0 Other Prof Fees 269825 0 0 0 Silicon Valley Community Foundation 801 Jefferson Avenue Redwood City CA 94063