2024-10-23T07:54:29-07:00 2023-12-31 824912386 JUDY L ARFA CPA PLLC 4265 SAN FELIPE 1100 HOUSTON TX 77027 990 2023-01-01 270950477 International Foundation For CDKL5 Research INTE 9792653411 P O Box 926 Wadsworth OH 44282 Karen Utley President 9792653411 2024-10-14 true true Judy L Arfa CPA P01070261 7132403315 2024-10-23 2023 2024-10-15 13:58:12Z Karen Utley 325 Brazoswood Clute TX 77531 640420 false X www.cdkl5.com X 2009 OH To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5. 8 8 0 12 0 0 606015 630788 0 574 3044 0 5350 606589 639182 574624 197884 0 0 0 9816 151086 216714 725710 414598 -119121 224584 631046 761142 312257 196191 318789 564951 To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5. false false 403158 197884 0 A number of fundraisers were held in 2023. In addition, contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $197,884 were made during 2023 to fund research that will lead to a cure for this very debilitating disease in the near future. The Organizations goals include aggressive research, studies to improve the quality of life for children with CDKL5, and testing of compounds to identify neurologic modifiers. 403158 true true false false false false false false false false false false false false false false false false false false false false false false true false false true false false false false false false false false false false true false false false false false false false false false true 2 0 true 0 false false false false false false false false false false false false X 8 8 false false false false false false false true true false false true true true true true true false false false X Karen Utley 9792653411 325 Brazoswood Clute TX 77531 X Karen Utley President 35.00 X X 0 0 0 Rick Upp Vice President 15.00 X X 0 0 0 Paul Miller Secretary 15.00 X X 0 0 0 Amanda Jaksha Treasurer 15.00 X X 0 0 0 Miriam Blase Director 1.00 X 0 0 0 Garrett Decker Director 1.00 X 0 0 0 Marissa Bishop Director 1.00 X 0 0 0 Melissa Ralston Board Member Emeritus 1.00 X 0 0 0 0 false false false 0 56529 574259 42217 630788 3044 0 3044 1238 56529 1238 0 0 0 5350 0 0 5350 5350 639182 0 0 8394 X 197884 197884 1250 1250 0 0 141348 141348 0 0 1082 1082 0 0 858 858 0 0 1780 1780 0 0 3667 3667 0 0 2864 1690 344 830 Fees - Payment Processing 3963 3963 0 0 Business Registration 2221 2221 0 0 Bank Charges 326 0 326 0 Postage 2892 2892 0 0 54463 44523 954 8986 414598 403158 1624 9816 219758 284614 296248 289364 13399 3399 101641 165432 18333 631046 761142 17717 1432 294540 194759 312257 196191 X 318789 564951 318789 564951 631046 761142 224584 21036 542 X false false false X 0 434402 505914 668072 606015 630788 2845191 0 0 434402 505914 668072 606015 630788 2845191 473755 2371436 4488 931 13 574 3044 9050 0 23654 128489 9962 5350 167455 3021696 95000 0.78480 0.75270 X 0 0 0 Pt II Ln 10 Other Income Part II, Line 10 Description: Sales of Merchandise Description: Cost of Goods Sold Description: Miscellaneous Revenue 2019: 5000. 2023: 5350. Description: Family Conference Income 2019: 2500. 2020: 92500. Description: Refunds 2019: 16154. 2020: 35989. 2021: 9962. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Froy 19245 19245 0 Ohio Golf 26822 25584 1238 1238 1 11700 11700 0 57767 56529 1238 1238 1238 0 true Children's Hospital Philadelphia 3401 Civic Center Blvd Philadelphia PA 19104 231352166 501(c)(3) 50000 0 N/A N/a Research Boston Children's Hospital 1295 Boylstyon Street Boston MA 02215 530196580 501(c)(3) 72884 0 N/A N/A 72884 Vanderbilt University Medical Center 3319 West End Avenue Suite 900 Nashville TN 37203 352528741 501(c)(3) 35000 0 N/A N/A 35000 NYU School of Medicine 550 1st Avenue New York NY 10016 133971298 501(c)(3) 25000 0 N/A N/A 25000 Orphan Disease Center at University of Pennsylvania 125 South 31st Street Philadelphia PA 19104 231352685 501(c)(3) 10000 0 N/A N/A 10000 5 0 Pt I Line 2 A group of officers monitors how these funds are being used on a Pt I Line 2 frequent basis. X 2 42217 Fair Market Value false true false Pt VI, Line 11b The form is reviewed by the Board Treasurer and other Pt VI, Line 11b members of the Board. All questions are reviewed to make Pt VI, Line 11b certain that there are no incorrect answers. Pt VI, Line 12c Questionnaires are required to be completed by all Pt VI, Line 12c Board members annually. Should there be reasons for Pt VI, Line 12c concern, there is a detailed review of all Pt VI, Line 12c transactions that appear to be a cause for concern. Pt VI, Line 19 Upon request, they are provided to grantors, contributors, Pt VI, Line 19 and Board members. Form 990, Part IX, Line 11g Outside Contract Services 72598. 72598. 0. 0. Form 990, Part IX, Line 11g Science Consultant 68750. 68750. 0. 0. Form 990, Part IX, Line 24e Donor Management 11106. 5109. 888. 5109. Form 990, Part IX, Line 24e Family Support 35323. 35323. 0. 0. Form 990, Part IX, Line 24e Fundraising Fees 3678. 0. 0. 3678. Form 990, Part IX, Line 24e Memberships & Dues 925. 925. 0. 0. Form 990, Part IX, Line 24e Printing 2475. 2475. 0. 0. Form 990, Part IX, Line 24e Telephone 662. 397. 66. 199. Form 990, Part IX, Line 24e Volunteer Appreciation 294. 294. 0. 0.