2025-07-31T14:00:11-05:00 2024-12-31 311119890 Barnes Dennig & Co LTD 150 East Fourth Street Cincinnati OH 45202 990 2024-01-01 311682518 International Rett Syndrome Foundation INTE 5138743020 4500 Cooper Road Suite 204 Cincinnati OH 45242 Laura Hameed Executive Director 5138743020 2025-07-30 1 1 Paula Hume P00537516 5132418313 2025-07-30 2024 2025-03-06 01:10:19Z Rettsyndromeorg Melissa Kennedy 4500 Cooper Road Suite 204 Cincinnati OH 45242 8730876 0 X www.rettsyndrome.org X 1999 OH To fund reseach aimed at potential cures for Rett syndrome and to empower families through education. 11 11 16 200 0 0 3586302 3808219 161492 334015 88797 261285 1019229 410229 4855820 4813748 856917 1856999 0 0 1223958 1288538 0 0 428352 1642897 2385485 3723772 5531022 1132048 -717274 6263405 5325567 379215 338142 5884190 4987425 To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity. 0 0 3676545 1856999 200291 Our commitment to finding treatments and a cure for Rett syndrome compels us to advance cutting edge research. Through our research programs we fund basic, translational grants throughout the world. We fund post-doctoral researchers, host science symposia to allow for discussions and networking of the world's Rett experts. We fund compound development directly through financial support of high throughput screening systems as well as financially supporting clinical trials. We actively support a clinical research network that develops care guidelines and contributes to a data registry that builds upon the NHS funded Natural History Study, and aims to continue to deepen our understanding of Rett syndrome and support drug development. 1084461 133724 We empower families through our robust educational programming, consisting of free monthly webinars covering health care topics of interest to families, as well as 4 in-person regional education days. We provide 24/7/365 access to 2 staff members who are devoted to family engagement. We provide educational materials for families, caregivers, schools and therapists. We advocate to federal officials, keeping Rett syndrome on the list of funding priorities. We work with industry in the design of clinical trials, ensuring the clinical trial environment is family centered. We support a network of clinics in North America that is building guidelines for clinical care, making those guidelines available to families as they work with their child's care team, ensuring they are receiving appropriate care. 4761006 1 1 0 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 16 0 1 16 1 0 0 0 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 1 1 1 1 0 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA VI WA WV WY X Brittney Gibson 5138743020 4500 Cooper Road Suite 204 Cincinnati OH 45242 Jospeh Horrigan MD Trustee 0.50 X 0 0 0 Lisa Monteggia PhD Trustee 0.50 X 0 0 0 David Pass PharmD Chairman 1.00 X X 0 0 0 Mitch Bleske Treasurer 1.00 X X 0 0 0 Gordon Rich Founding Seat - Non Voting 0.50 X X 0 0 0 Alan Shukovsky Trustee 0.50 X 0 0 0 Leslie Mehta Esq Interim Chief Executive Officer 0.50 X X 5208 0 0 Mary Forrest Engel Trustee 0.50 X 0 0 0 Steve Wood Vice Chairman 0.50 X X 0 0 0 Laura Stoppel PhD Trustee 0.50 X 0 0 0 Parthy Evans Trustee - Start 07/24 0.50 X 0 0 0 Steve Marconi CPA Trustee - Start 07/24 0.50 X 0 0 0 Melissa Kennedy - Exit 1224 Chief Executive Officer 40.00 X 186940 0 2279 Nupur Garg VP of Research 40.00 X 187300 0 7384 Timothy Frank Development Director 40.00 X 116466 0 2264 Meghan Cordeiro Marketing & Communication Director 40.00 X 113308 0 6234 Drew Jones VP of Clinical Development 40.00 X 108976 0 839 718198 0 19000 5 0 1 0 0 1198216 2610003 131317 3808219 Conference Income 611710 200291 200291 Service Revenue 900099 133724 133724 334015 118142 118142 3779144 3636001 143143 143143 143143 691356 1198216 281127 410229 410229 4813748 334015 0 671514 1678482 1678482 178517 178517 194427 136099 29164 29164 966531 724341 121077 121113 20980 15551 5429 15610 11665 2013 1932 90990 67444 11981 11565 2589 2589 86530 86530 28619 28619 92838 82572 10266 33930 25557 4117 4256 291816 198410 10695 82711 29485 22739 3202 3544 776379 690145 16127 70107 20437 15566 2502 2369 Direct Program Costs 845928 836192 4656 5080 Bank and other fees 92181 6965 3964 81252 Human Resources and Oth 70720 59513 8500 2707 Miscellaneous 14033 11248 499 2286 5531022 4761006 341664 428352 2205423 2178126 169301 0 50000 55175 97701 3762763 2941277 70743 58463 6263405 5325567 204945 251044 124681 50000 49589 37098 379215 338142 X 4582266 3780033 1301924 1207392 5884190 4987425 6263405 5325567 X -717274 -180212 721 X X 0 1 X 1 0 X 3832035 4006260 3581751 3586302 3808219 18814567 3832035 4006260 3581751 3586302 3808219 18814567 465362 18349205 78707 100997 74911 125135 118142 497892 19643 8422 355 28420 19340879 805909 0.94870 0.94400 X Schedule A, Part II, Line 10, Explanation of Other Income: Other Income - 2021 Amount: $ 19,643. 2022 Amount: $ 8,422. 2023 Amount: $ 355. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1103954 142027 62380 1183601 1030621 128447 55114 1103954 1366359 -223748 111990 1030621 1279391 168526 70000 11558 1366359 1203115 135634 59358 1279391 1.00000 1 0 0 Right to Use Liability 37098 37098 X 4898730 -180212 11965 281848 113601 4785129 28619 28619 4813748 5795495 11965 281127 293092 5502403 28619 28619 5531022 Part V, Line 4: Money earned from the endowment funds will be used to fund our program service of Research or Family Empowerment. Part X, Line 2: IRSF is exempt from income taxes under Section 501 of the Internal Revenue Code and a similar provision of Ohio law. However, the IRSF is subject to federal income tax on any unrelated business taxable income. IRSF's IRS Form 990 is subject to review and examination by federal and state authorities. IRSF believes it has appropriate support for any tax positions taken, and therefore, does not have any uncertain income tax positions that are material to the financial statements. Part XI, Line 2d - Other Adjustments: Special Event Expense 281,127. Change in Beneficial Interest in Trust 721. Part XII, Line 2d - Other Adjustments: Special Event Expense 281,127. 1 Europe (Including Iceland & Greenland) 0 0 Grants to recipients in the region Research Grant 160837 Middle East and North Africa 0 0 Grants to recipents in the region Research Grant East Asia and the Pacific 0 0 Grants to recipents in the region Research Grant 17680 0 0 0 0 0 0 178517 0 178517 Europe (Including Iceland & Greenland) Other 160837 Electronic Fund/Wire Transfer 0 East Asia and the Pacific Other 17680 Electronic Fund/Wire Transfer 0 3 0 0 0 0 0 0 0 Part I, Line 2: Our Grant award process includes a letter of intent (LOI) submitted to the Foundation. LOIs are reviewed to determine whether the described project fits the intended research program and grant mechanism. Applicants with eligible LOIs are asked to submit a full grant application and a peer-review meeting of scientific reviewers is convened to determine which projects have the highest scientific merit. Research grants are recommended to the foundation's Board of Directors who vote to approve. Researchers are then required to sign an acceptance agreement with the foundation and are required to submit two reports a year on progress. The Chief Science Officer and Manager of Grants & Research review the reports and corresponds with the researcher to ensure proper use of funds. The Foundation makes quarterly payments to all researchers, unless there is a special exception. Raise a Glass Houston 157142 139239 17903 14938 22976 14775 Ohio Magato Stroll 148168 148168 141 5489 519 261 12526 33 1584262 910809 673453 15851 65230 23557 6687 98177 1889572 1198216 691356 15992 85657 47052 6948 125478 281127 410229 1 North Carolina State University 2601 Wolf Village Way Suite 240 CB 7514 Raleigh NC 27606 566000756 120982 0 Rett Syndrome Research The General Hospital Corporation dba Massachusetts General Hospital 399 Revolution Drive Suite 740 Somerville MA 02145 042697983 300000 0 Rett Syndrome Research Vanderbilt University 110 21st Avenue South Nashville TN 37203 620476822 137500 0 Rett Syndrome Research The Regents of the University of Colorado 1800 Grant Street Suite 600 Denver CO 80203 846000555 137500 0 Rett Syndrome Research Regents of the University of California 1850 Research Park Drive Suite 300 Davis CA 95618 943067788 50000 0 Rett Syndrome Research The Rockefeller University 1230 York Avenue New York NY 10065 131624158 120000 0 Rett Syndrome Research Whitehead University 455 Main Street Cambridge MA 02142 061043412 50000 0 Rett Syndrome Research The University of North Carolina at Chapel Hill 104 Airport Drive Ste 2200 Box 1350 Chapel Hill NC 27599 566001393 100000 0 Rett Syndrome Research The University of Texas Southwestern Medical Center 5323 Harry Hines Blvd MC9029 Dallas TX 75390 756002868 137500 0 Rett Syndrome Research University of Colorado Denver Grants Contracts 213631 TB PO Box 910238 Denver CO 80291 846000555 125000 0 Rett Syndrome Research University of Virginia Rector & Visitors 101 North Emmet Street Charlottesville VA 22903 546001796 100000 0 Rett Syndrome Research University of Wisconsin-Madison Research Sponsored Programs 21 North Park Street Suite 6301 Madison WI 53715 396006492 300000 0 Rett Syndrome Research 12 0 Part I, Line 2: Our Grant award process includes a letter of intent (LOI) submitted to the Foundation. LOIs are reviewed to determine whether the described project fits the intended research program and grant mechanisms. Applicants with eligible LOIs are asked to submit a full grant application and a peer-review meeting of scientific reviewers is convened to determine which projects have the highest scientific merit. Research grants are recommended to the foundation's Board of Directors who vote to approve. Researchers are then required to sign an acceptance agreement with the foundation and are required to submit two reports a year on progress. The Chief Science Officer and Manager of Grants & Research review the reports and corresponds with the researcher to ensure proper use of funds. The Foundation makes quarterly payments to all researchers, unless there is a special exception. X X X 0 0 0 0 0 0 0 0 0 Nupur Garg VP of Research 187300 0 0 0 0 0 7384 0 0 0 194684 0 0 0 Melissa Kennedy - Exit 1224 Chief Executive Officer 186940 0 0 0 0 0 0 0 2279 0 189219 0 0 0 X 1 131317 0 0 0 0 Form 990, Part VI, Section B, line 11b The organization emails the 990 to board members, asking for comments or questions before it is filed. Form 990, Part VI, Section B, line 12c Annually the entire board reviews the policy and a vote is taken. Additionally, when new members are elected they receive the policy and acknowledge their agreement. Form 990, Part VI, Section B, line 15 We investigated compensation of other like-sized organizations. We also benchmarked against other nonprofits on their websites. Compensation is approved by the board. Form 990, Part VI, Section C, line 19 The governing documents of the organization are available on the Ohio Secretary of State's website. The financial statements are available within the annual report which is available upon request. The conflict of interest policy is available upon request. Form 990, Part XI, line 9: Change in Beneficial Interest in Trust 721. Form 990, Part XII, Line 2c: There were no changes to the process in the current year.