2026-08-13T11:05:34-07:00 2025-12-31 990 2025-01-01 043594491 SPASTIC PARAPLEGIA FOUNDATION INC SPAS 8777734483 6952 Clayborne Drive O Fallon MO 63368 Lorri Steiner Treasurer 6152600559 2026-08-14 2025 2025-03-06 01:10:19Z Spastic Paraplegia Foundation SPF Greg Pruitt 1801 Byrd Road Mayfield KY 42066 1742632 0 X www.sp-foundation.org X 2002 MA 1. To fund scientific research to discover the cures for hereditary spastic paraplegia and primary lateral sclerosis. 2. To provide information about the disorders to patients and their loved ones, and to the general public. 3. To provide emotional support to patients and their loved ones. 11 11 1 100 0 0 1597572 1590580 37315 32940 90207 119112 5686 0 1730780 1742632 609828 1121008 0 0 38350 52230 0 12500 64285 251415 232824 899593 1418562 831187 324070 3089987 3551338 1210040 1334190 1879947 2217148 1. To fund scientific research to discover the cures for hereditary spastic paraplegia and primary lateral sclerosis. 2. To provide information about the disorders to patients and their loved ones, and to the general public. 3. To provide emotional support to patients and their loved ones 0 0 1121008 1121008 0 Scientific research grants are awarded to academic researchers in universities both in the United States and internationally. A Scientific Advisory Board generally reviews and ranks grant proposals received. The Foundation funds only the top ranked proposals using the same ranking criteria for each proposal. Grants are divided into up to five installments. The first installment is issued after a countersigned Research Grant Agreement is returned to the Foundation. Each of the remaining installments are issued after a satisfactory progress report or final report from the researcher. The amount above reflects the amount of grant expense in 2025. 122042 0 32350 The Foundation holds an annual conference each year for individuals suffering from the disease, their families, and caregivers. Researchers speak about primary lateral sclerosis and hereditary spastic paraplegia, including updates on the current state of their research. Attendees meet others affected by the disorders, typically the first time these individuals have met others with the same condition in person. Attendees pay a registration fee to attend. 11762 0 0 The Foundation prints and distributes "Synapse", a periodical about the disorders, activities of the Foundation, and articles about research. 12600 0 0 Software to facilitate advocacy of rare diseases, grant accounting, Sponsorships/Grants to organizations with complementary services to Spastic Paraplegia Foundation, Inc. 12600 0 0 1267412 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 1 0 0 1 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 1 1 0 0 0 0 0 0 0 0 X 11 11 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AK AL AR CA CO FL GA HI IL KS KY MA MD ME MI MN MS MT NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X X Lorri Steiner 8777734483 6952 Clayborne Drive O Fallon MO 63368 Linda Arnold Fundraising and Relationship Development Manager 35.00 0 X 32500 0 32500 Lorri Steiner Treasurer 6 X 30700 0 30700 Hank Chiuppi Secretary/Director 20 0 X X 0 0 0 John Cobb Director 2 0 X 0 0 0 Tina Croghan Director 5 0 X 0 0 0 Frank Davis Director 2 0 X 0 0 0 Dina Landphair Director 5 0 X 0 0 0 Greg Pruitt President/Director 40 0 X X 0 0 0 Jim Sheorn Vice President/Director 30 0 X X 0 0 0 Carina Thurgood Director 2 0 X 0 0 0 Jackie Wellman Director 2 0 X X 0 0 0 Becki Cochran Director 2 0 X 0 0 0 Sara Kramer Director 1.00 0 X 0 0 0 63200 0 63200 0 0 0 0 0 0 0 144760 0 0 1445820 161389 1590580 Program Fees for AC 900099 32940 32940 0 0 0 0 0 0 32940 119112 119112 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 144760 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1742632 152052 0 0 963238 963238 0 0 157770 157770 0 0 30700 4633 26067 0 0 0 0 0 20000 0 0 20000 0 0 0 0 0 0 0 0 1530 0 0 1530 4826 0 4826 0 2670 0 2670 0 37848 0 37848 0 0 0 0 0 12500 12500 0 0 0 0 0 0 0 0 4402 0 0 4402 826 0 140 686 15862 3467 4298 8097 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 122042 122042 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1476 0 1476 0 Printing and Reproduction Costs 25780 11762 66 13952 Other Expenses 4695 4500 195 0 Bank Service Charges 8186 0 5068 3118 License, Permits and Charity Registration Filing Fees 4211 0 4211 0 0 0 0 0 1418562 1267412 86865 64285 1424121 0 0 1819243 3403 4143 0 0 0 0 0 0 0 0 0 0 0 1428 0 1662463 1726524 0 0 0 0 0 0 3089987 3551338 15954 5079 1194086 1329111 0 0 0 0 0 0 0 0 0 0 0 0 0 1210040 1334190 X 1829947 2217148 50000 0 1879947 2217148 3089987 3551338 324070 13131 0 0 0 0 X 0 1 X 1 0 X 1123514 1281413 1244568 1597572 1590580 6837647 1123514 1281413 1244568 1597572 1590580 6837647 1540615 5297032 29866 30504 90207 119112 269689 7107336 32940 0.74529 0.97184 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1726524 F 0 1726524 1755765 13133 0 0 0 13133 1742632 0 0 0 1742632 1418562 0 0 0 0 0 1418562 0 0 0 1418562 1 Europe (including Iceland and Greenland) 0 0 Grantmaking 157770 0 0 157770 Europe (including Iceland and Greenland) Development of a spastin recovery biomarker 11000 wire transfer 0 book value Europe (including Iceland and Greenland) Decoding Neuronal Network Dysfunction and Extracellular Vesicle Signatures in Primary Lateral Sclerosis 150000 wire transfer 0 book value 0 3 0 0 0 0 0 0 Schedule F, Part I, Line 2 The Organization reviews and ranks research proposals according to their alignment with the mission of SPF. The Board of Directors reviews the rankings and makes awards based upon the availability of funds from donations. The Board of Directors also considers proposals that will facilitate advocacy, therapies, and open research. Awards are generally, though not always, paid in 5 installments. The first installment is paid upon receipt of a countersigned research grant agreement. The second through fourth installment payments are made upon receipt of an interim progress report describing the research conducted under the award to date. The fifth installment payment is made upon receipt of a final report of clinical findings and a financial report detailing how the grant funds were utilized. 5K Walk Roll or Run 90130 0 90130 0 0 0 0 0 1824 Golf Tournaments 54630 0 54630 0 0 0 0 0 2578 0 144760 0 144760 0 0 0 0 0 4402 4402 140358 1 Critical Path Institute 1840 E River Road No 100 Tucson AZ 85718 201991334 500000 0 book Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) Taskforce to create a consortium between leading academic institutions, pharmaceutical industries, patient groups, non-governmental agencies and regulatory agencies to address unmet drug development needs for patients living with HSP and PLS. Columbia University Columbia University Sponsored Proje PO Box 29789 New York NY 10087 135598093 149957 0 book value Extension of Natural History Study of PLS Children's Hospital Corporation Grants Management Harvard University 1295 Boylston Street 4th Floor Boston MA 02215 042774441 75000 0 book value Bridge SP-CERN to fund the existing project until NIH funding was received To Cure A Rose Foundation 6101 Highland Campus Drive Suite 4000 Room 2250 Austin TX 78752 862919742 89000 0 book value Frank Davis Amenability and Tool Box Drexel University 3250 Chesnut Street Suite 3010 Philadelphia PA 19104 231352630 150000 0 book value Combination Therapy for HSP-SPG4: Repurposed FDA Drug, BpV-Mediated Regeneration, and Activity-Based Rehabilitation 6 0 Schedule I, Part I, Line 2 The Organization reviews and ranks every research grant proposal submitted according to their alignment with the mission of SPF. Awards are made based upon the availability of funds from donations. The Board of Directors also considers other proposals that will facilitate advocacy, therapies and open research. Awards of all types are generally paid in 5 installments. The first installment is paid upon receipt of a countersigned research grant agreement. The second through fourth installment payments are made upon receipt of an interim progress report describing the research conducted under the award to date. The fifth and final installment payment is made upon receipt of a final report of clinical findings and a financial report detailing how the grant funds were utilized. X 5 161389 Fair Market Value 0 0 0 1 Schedule M, Part I, Line 32b The Organization holds a brokerage account with Synovus Securities, who has a standing order to sell securities as soon as possible when they are donated. Form 990, Part VI, Section B, Line 11b The Board of Directors was provided a complete draft of the 990 and was provided the opportunity to ask questions prior to filing with the IRS. Form 990, Part VI, Section B, Line 12c All conflict of interest language is included in the Organization's bylaws. Excerpts were provided to the Board to review to prompt disclosure of any potential conflicts of interest. None were noted. Each Board Member and Officer completed a written attestation confirming no conflicts of interest exist. Form 990, Part VI, Section B, Line 15 While the highest management official, the Executive Director, remains a volunteer position, the Organization has hired an Independent Contractor Treasurer (in 2024) and an employed Fundraising and Relationship Development Manager (in 2025). The full Board reviewed the proposals and rate of compensation for both positions before approving the positions and the rates of compensation for each. Form 990, Part VI, Section C, Line 19 On the organization's website