2024-07-15T13:04:02-05:00 2023-12-31 311119890 Barnes Dennig & Co LTD 150 East Fourth Street Cincinnati OH 45202 990 2023-01-01 311682518 International Rett Syndrome Foundation INTE 5138743020 4500 Cooper Road Suite 204 Cincinnati OH 45242 Melissa Kennedy Executive Director 5138743020 2024-07-09 1 Melissa Kennedy XXX-XX-XXXX 0 Paula Hume P00537516 5132418313 2024-07-09 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z Rettsyndromeorg Melissa Kennedy 4500 Cooper Road Suite 204 Cincinnati OH 45242 8217773 0 X www.rettsyndrome.org X 1999 OH To fund reseach aimed at potential cures for Rett syndrome and to empower families through education. 13 13 14 200 0 0 3581751 3586302 310152 161492 -108882 88797 -113713 1019229 3669308 4855820 1969729 856917 0 0 1193854 1223958 0 0 346387 2330644 1642897 5494227 3723772 -1824919 1132048 6438774 6263405 1972873 379215 4465901 5884190 To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity. 0 0 2440118 856917 161492 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. 636097 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. 3076215 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 22 0 1 14 1 0 0 0 0 0 0 0 0 0 0 0 0 X 13 13 1 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 Steve Tomes Trustee 0.50 X 0 0 0 Beth Farnum Trustee 0.50 X 0 0 0 William Babiarz Trustee 0.50 X 0 0 0 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 Christian McMahan Vice Chairman 0.50 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 Secretary 0.50 X X 0 0 0 Mary Forrest Engel Trustee 0.50 X 0 0 0 Steve Wood Trustee 0.50 X 0 0 0 Laura Stoppel Trustee 0.50 X 0 0 0 Melissa Kennedy Executive Director 40.00 X 168053 0 2207 Dominique Pichard Chief Science Officer 40.00 X 172749 0 588 Timothy Frank Chief Market & Dev. Officer 40.00 X 117632 0 2089 Meghan Cordeiro Marketing & Communications Director 40.00 X 104388 0 6371 Nupur Garg VP of Research 40.00 X 125320 0 4888 688142 0 16143 5 0 1 0 0 381561 3204741 334941 3586302 Conference Income 611710 161492 161492 161492 125135 125135 2983729 3020067 -36338 -36338 -36338 1359366 381561 339553 1019813 1019813 1394 2333 -939 -939 Miscellaenous Income 900099 355 355 355 4855820 161492 0 1108026 687123 687123 169794 169794 704286 571663 60559 72064 398590 324359 51384 22847 8312 5419 2893 24641 20817 2301 1523 88129 71558 9089 7482 4653 4653 36234 36234 27119 27119 117742 99206 6036 12500 29680 18142 5593 5945 222473 136745 11571 74157 29472 140 29332 345824 279455 3445 62924 4053 4053 Direct Program Costs 668990 668990 Bank and other fees 102101 4256 21210 76635 Miscellaneous 28732 18548 653 9531 Survey Expenses 25824 25045 779 3723772 3076215 301170 346387 2298985 2205423 168369 169301 16896 55175 3872292 3762763 82232 70743 6438774 6263405 193216 204945 1718223 124681 61434 49589 1972873 379215 X 3238822 4582266 1227079 1301924 4465901 5884190 6438774 6263405 X 1132048 284729 1512 X X 0 1 X 1 0 X 4909551 3832035 4006260 3581751 3586302 19915899 4909551 3832035 4006260 3581751 3586302 19915899 643730 19272169 90649 78707 100997 74911 125135 470399 19643 8422 355 28420 20414718 476591 0.94400 0.95870 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 1030621 128447 55114 1103954 1366359 -223748 111990 1030621 1279391 168526 70000 11558 1366359 1203115 135634 59358 1279391 1011194 191921 1203115 1.00000 1 0 0 Right to Use Liability 49589 49589 X 5456828 284729 343398 628127 4828701 27119 27119 4855820 4038539 341886 341886 3696653 27119 27119 3723772 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 339,553. Change in Beneficial Interest in Trust 1,512. Cost of Sales 2,333. Part XII, Line 2d - Other Adjustments: Special Event Expense 339,553. Cost of Sales 2,333. 1 Europe (Including Iceland & Greenland) 0 0 Grants to recipients in the region Research Grant 114793 Middle East and North Africa 0 0 Grants to recipents in the region Research Grant 37411 East Asia and the Pacific 0 0 Grants to recipents in the region Research Grant 17590 0 0 0 0 0 0 169794 0 169794 Europe (Including Iceland & Greenland) Research 114793 Electronic Fund/Wire Transfer 0 Middle East and North Africa Research 37411 Electronic Fund/Wire Transfer 0 East Asia and the Pacific Research 17590 Electronic Fund/Wire Transfer 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 Virtual 381561 381561 30314 15051 4300 67501 Babiarz Family Special Event 215517 215517 10000 1962 10917 32 1143849 1143849 69081 20961 2105 107361 1740927 381561 1359366 109395 37974 6405 185779 339553 1019813 1 Boston Children's Hospital 300 Longwood Avenue CLS 13034 Boston MA 02115 956006144 75000 0 Rett Syndrome Research Loyola Univeristy Chicago 2160 S First Avenue CTRE 245 Maywood IL 60153 361408475 150000 0 Rett Syndrome Research Vanderbilt 2201 West End Ave Nashville TN 37235 620476822 149623 0 Rett Syndrome Research Lucy Therapeutics Inc 21 Hickory Drive Suite 2B Waltham MA 02451 822363951 50000 0 Rett Syndrome Research The Regents of the University of California US San Diego 1111 Franklin Street Oakland CA 94607 943067788 150000 0 Rett Syndrome Research University of California UC San Diego 9500 Gilman Dr MC-0714 La Jolla CA 92093 956006144 75000 0 Rett Syndrome Research Whitehead University 455 Main Street Cambridge MA 02142 061043412 37500 0 Rett Syndrome Research 7 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 Dominique Pichard Chief Science Officer 172749 0 0 0 0 0 0 0 588 0 173337 0 0 0 Melissa Kennedy Executive Director 168053 0 0 0 0 0 0 0 2207 0 170260 0 0 0 X 18250 334941 Cost 0 0 0 0 Form 990, Part VI, Section A, line 2 Beth Farnum and David Pass have a family relationship. 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 1,512. Form 990, Part XI, line 2c: There were no changes to the process in the current year.