2024-10-24T14:10:02-07:00 2023-12-31 990 2023-01-01 043594491 SPASTIC PARAPLEGIA FOUNDATION INC SPAS 8777734483 6952 Clayborne Drive O Fallon MO 63368 Lorri Steiner Assistant Treasurer 6152600559 2024-10-24 1 2023 2024-10-15 13:58:12Z X Spastic Paraplegia Foundation Greg Pruitt 1801 Byrd Road Mayfield KY 420167801 1324845 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. 12 12 0 100 0 0 1281413 1244568 31365 49773 -63697 30504 0 1249081 1324845 575189 1930438 0 0 0 4384 173211 -1824 748400 1928614 500681 -603769 2855492 3308442 1331690 2277085 1523802 1031357 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 1769938 1769938 0 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. 93964 0 30651 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. 24117 0 0 The Foundation prints and distributes "Synapse", a periodical about the disorders, activities of the Foundation, and articles about research. 8233 0 0 Educational expenses to conduct and promote SPF talks 8233 0 0 1896252 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 1 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 0 0 0 0 0 0 0 0 0 X 12 12 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 0 0 AL AR CA CO CT FL GA HI IL KS KY MA MD ME MI MN MS NC NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X Lorri Steiner 6152600559 6952 Clayborne Drive O Fallon MO 63368 X Corey Braastad Director 5 0 X 0 0 0 Hank Chiuppi Secretary/Director 30 0 X X 0 0 0 John Cobb Director 10.00 0 X 0 0 0 Tina Croghan Director 10.00 0 X 0 0 0 Frank Davis Director 5 0 X 0 0 0 Dina Landphair Director 10 0 X 0 0 0 David Lewis Treasurer 5 0 X X 0 0 0 Greg Pruitt President/Director 30 0 X X 0 0 0 Jim Sheorn Vice President/Director 30 0 X X 0 0 0 Carina Thurgood Director 5 0 X 0 0 0 Jackie Wellman Director 10 0 X 0 0 0 0 0 0 0 0 0 0 0 2100 0 0 0 0 1242468 219534 1244568 Annual Conference 900099 30651 30651 0 0 19122 19122 0 0 49773 30504 30504 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1324845 80277 0 0 1276000 1276000 0 0 654438 654438 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 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 22455 7588 13572 1295 0 0 0 0 31135 24762 3284 3089 8961 0 8961 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 93964 93964 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 adjustments to grant payable balances -160500 -160500 0 0 license and permits 2161 0 2161 0 0 0 0 0 1928614 1896252 27978 4384 1076477 1733763 0 30000 30000 0 0 0 0 0 0 0 0 0 0 0 14800 0 0 0 1749015 1529879 0 0 0 0 0 0 2855492 3308442 9000 9000 1322690 2268085 0 0 0 0 0 0 0 0 0 0 0 0 0 1331690 2277085 X 1523802 1031357 0 0 1523802 1031357 2855492 3308442 -603769 111324 0 0 0 0 X 0 1 X 1 0 X 966989 901504 1123514 1281413 1244568 5517988 966989 901504 1123514 1281413 1244568 5517988 1310712 4207276 20022 27553 29866 30504 107945 5625933 81138 0.74784 0.8114 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 Certificates of Deposit 1529879 F 1529879 1472929 111324 36760 0 0 148084 1324845 0 0 0 1324845 1965374 36760 0 0 0 36760 1928614 0 0 0 1928614 1 Europe (including Iceland and Greenland) 0 0 Grantmaking Grants were awarded to fund medical research towards the cure and therapies for the specific diseases of HSP and PLS. 654438 0 0 654438 Europe (including Iceland and Greenland) The organization made 5 grants to institutions within Europe. Each of these grants was for the purpose of medical research seeking a cure and therapies for the specific rare diseases of HSP and PLS. 654438 wire transfer 0 USD 0 5 0 0 0 0 0 0 Schedule F, Part I, Line 2 The Organization has a Scientific Advisory Board that reviews and ranks the proposals according to their alignment with the mission of SPF. The Board of Directors reviews this ranking and makes awards based upon the availability of funds from donations. Awards typically are paid in 5 installments. The first installment is made 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 funds of the award were utilized. 1 Columbia University PO Box 29789 New York NY 10087 135598093 76000 0 cash NA medical research - additional support for the previously awarded "Establishing the natural history of PLS for future clinical trials: Analyzing disease progress in patients with PLS to develop historical controls which can be used for the first clinical trial in PLS in the near future". Led by Dr. Mitsumoto. Drexel University 1505 15th Street Philadelphia PA 19102 231352630 150000 0 book medical research led by Dr. Piermarini Mayo Clinic 4500 San Pablo Road Jacksonville FL 32224 416011702 150000 0 book medical research let by Dr. Blitterswijk. Drexel University 1505 15th Street Philadelphia PA 19102 231352630 150000 0 book medical research led by Dr. Baas. Northwestern University 633 Clark Street Suite G-547 Evanston IL 60208 362167817 150000 0 book medical research led by Dr. Gautam. Boston Children's Hospital 300 Longwood Avenue Boston MA 02115 042774441 600000 0 book research collaboration - Centers of Excellence - led by Dr. Fahkari. 0 6 Schedule I, Part I, Line 2 The Organization has a Scientific Advisory Board that reviews and ranks the proposals according to their alignment with the mission of SPF. The Board of Directors reviews this ranking and makes awards based upon the availability of funds from donations. Awards typically are paid in 5 installments. The first installment is made 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 funds of the award were utilized. X 3 182774 fair value at sale 0 0 1 Schedule M, Part I, Line 32b The organization holds a brokerage account with Synovus Securities for the purpose of converting donated equity to cash through a sale of the publicly traded security (stock) that was donated. Form 990, Part VI, Section B, Line 11b A draft was provided to all Board members via email prior to filing with the IRS. The Board was given time to ask questions of the SPF Co-Treasurers: David Lewis and Lorri Steiner. Form 990, Part VI, Section B, Line 12c The policy has always been written into the bylaws and articles of incorporation. The organization's Statement of Expectation for Board Members addresses conflicts of interests as well and is posted on the organization's website creating public oversight and accountability for existing Board Members as well as expectations for prospective Board Members. Form 990, Part VI, Section C, Line 19 The audited financial statements and the 990 are posted on the organization's website.