2025-05-13T18:51:03-07:00 2024-12-31 990 2024-01-01 043594491 SPASTIC PARAPLEGIA FOUNDATION INC SPAS 8777734483 6952 Clayborne Drive O Fallon MO 63368 Lorri Steiner Treasurer 6152600559 2025-05-13 1 2024 2025-03-06 01:10:19Z Spastic Paraplegia Foundation SPF Greg Pruitt 1801 Byrd Road Mayfield KY 420167801 1730780 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 0 100 0 0 1244568 1597572 49773 37315 30504 90207 0 5686 1324845 1730780 1930438 609828 0 0 0 38350 0 0 37811 -1824 251415 1928614 899593 -603769 831187 3308442 3089987 2277085 1210040 1031357 1879947 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 617153 602174 19040 Scientific research grants were awarded to academic researchers in universities both in the United States and internationally. A Scientific Advisory Board reviews and ranks all grant proposals received each year. The Foundation funds only the top ranked proposals. 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 payments made in 2023. 152645 0 37315 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. 13367 0 0 The Foundation prints and distributes "Synapse", a periodical about the disorders, activities of the Foundation, and articles about research. 4013 0 0 Printing expenses to update annual report recipients of medical research status; software to facilitate advocacy of rare diseases 4013 0 0 787178 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 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 0 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 0 0 0 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 6152600559 6952 Clayborne Drive O Fallon MO 63368 Lorri Steiner Treasurer 10 0 X 38350 0 0 Corey Braastad Director 2.00 0 X 0 0 0 Hank Chiuppi Secretary/Director 15.00 0 X 0 0 0 John Cobb Director 5 0 X 0 0 0 Tina Croghan Director 5 0 X 0 0 0 Frank Davis Director 5 0 X 0 0 0 Dina Landphair Director 5 0 X 0 0 0 David Lewis Treasurer 2 0 X 0 0 0 Greg Pruitt President/Director 30.00 0 X 0 0 0 Jim Sheorn Vice President/Director 30 0 X 0 0 0 Carina Thurgood Director 2 0 X 0 0 0 Jackie Wellman Director 5 0 X 0 0 0 38350 0 0 0 0 0 0 0 953 0 127857 0 0 1468762 243305 1597572 Program Fees for AC 900099 37315 37315 0 0 0 0 0 0 37315 90207 90207 0 0 0 0 0 0 0 0 0 0 0 0 0 0 127857 5686 5686 0 0 5686 1730780 133208 0 0 310000 310000 0 0 299828 299828 0 0 38350 7325 31025 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 10847 0 10847 0 894 0 894 0 15780 0 15780 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 2338 0 1226 1112 19765 3206 3359 13200 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 152645 152645 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1882 0 1882 0 Printing and Reproduction Costs 27600 14174 403 13023 Bank and Service Fees 9244 0 3745 5499 Supplies for Golf Tournament and 5K Walk Run or Roll 4977 0 0 4977 Charity Registration Renewal Fees and Related Expenses 4902 0 4902 0 541 541 0 899593 787178 74604 37811 1733763 1424121 0 30000 3403 0 0 0 0 0 0 0 0 0 0 14800 0 0 1529879 1662463 0 0 0 0 0 0 3308442 3089987 9000 15954 2268085 1194086 0 0 0 0 0 0 0 0 0 0 0 0 2277085 1210040 X 1031357 1829947 0 50000 1031357 1879947 3308442 3089987 X 831187 9751 0 0 0 7652 X 0 1 X 1 0 X 901504 1123514 1281413 1244568 1597572 6148571 901504 1123514 1281413 1244568 1597572 6148571 6148571 27553 29866 30504 90207 178130 6326701 42589 0.97184 0.74784 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1662463 C 0 1662463 1783929 9749 43400 0 0 53149 1730780 0 0 0 1730780 935339 43400 0 -7654 0 35746 899593 0 0 0 899593 Europe (including Iceland and Greenland) Therapeutic Strategies for SPG 11 149000 wire transfer 0 USD South America Spinal Cord morphometry and diffusion tensor imaging in hereditary spastic paraplegia: a one-year longitudinal study 118000 wire transfer 0 USD Europe (including Iceland and Greenland) Final payment to King's College for prior grant 32828 wire transfer 0 USD 0 3 0 0 0 0 0 0 5K Walk Run or Roll 100237 0 100237 0 0 0 0 0 2547 Golf Tournament 27620 0 27620 0 0 0 0 0 2430 0 127857 0 127857 0 0 0 0 0 4977 4977 122880 1 Emory University 1365 Clifton Road NE Building B Atlanta GA 30322 580566256 150000 0 book Modulation of Spasticity Using a Chemogenetic Approach. Led by Dr. Anthony Donsante, PhD Drexel University 3250 Chesnut Street Suite 3010 Philadelphia PA 19104 231352630 150000 0 book M1 monoclonal antibodies: A new tool for detection and treatment of SPG4-HSP. Led by Dr. Peter Baas. Columbia University PO Box 29789 New York NY 10087 135598093 10000 0 book PLS International Conference 0 3 Schedule I, Part I, Line 2 The Organization has a Scientific Advisory Board (SAB) that reviews and ranks research grant proposals according to their alignment with the mission of SPF. The Board of Directors reviews the rankings made by the SAB and makes awards 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 off 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 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 4 243305 fair value at sale 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 was consolidated into the Organization's by laws and the Board reviewed and approved the conflict of interest language prior to approving the by laws. Form 990, Part VI, Section B, Line 15 The Organization hired an Independent Contractor to perform the Treasurer function in 2024. The full Board reviewed the proposal and the rate of the Contractor before approving the position and the hourly rate. Form 990, Part VI, Section C, Line 19 On the organization's website Form 990, Part XI, Line 9 Unused funds from prior grants that were returned during 2024