2025-10-19T11:12:56-07:00 2024-12-31 824912386 JUDY L ARFA CPA PLLC 4265 SAN FELIPE 1100 HOUSTON TX 77027 990 2024-01-01 270950477 International Foundation For CDKL5 Research INTE 9792653411 P O Box 926 Wadsworth OH 44282 Karen Utley President 9792653411 2025-10-16 true true Judy L Arfa CPA P01070261 7132403315 2025-10-19 2024 2025-03-06 01:10:19Z Karen Utley 325 Brazoswood Clute TX 77531 718028 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 630788 712663 0 3044 3677 5350 0 639182 716340 197884 120515 0 0 0 3341 216714 236496 414598 357011 224584 359329 761142 976798 196191 12536 564951 964262 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 313492 120515 0 In 2024, cash and noncash contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $120,515 were made during 2024 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. 313492 true true false false false false false false false false false false false false false false true 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 3 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 Churgin 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 54704 657959 42544 712663 3677 0 3677 1688 54704 1688 0 0 0 716340 0 0 3677 X 120515 120515 1624 0 1624 0 56666 50999 5667 0 336 0 302 34 1625 0 1625 0 1170 1170 0 0 7334 3667 3667 0 2942 0 2942 0 Business Registration 8044 0 8044 0 Bank Charges 7392 0 7392 0 149363 137141 8915 3307 357011 313492 40178 3341 284614 387550 289364 328288 3399 4618 165432 245342 18333 11000 761142 976798 1432 7200 194759 5336 196191 12536 X 564951 964262 564951 964262 761142 976798 359329 35588 4394 X false true X true false X 0 505914 668072 606015 630788 712663 3123452 0 0 505914 668072 606015 630788 712663 3123452 506997 2616455 931 13 574 3044 3677 8239 0 128489 9962 5350 143801 3275492 92500 0.79880 0.78480 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 2023: 5350. Description: Family Conference Income 2020: 92500. Description: Refunds 2020: 35989. 2021: 9962. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 753616 35588 35588 718028 -1688 -1688 716340 358701 1688 1688 357013 -2 -2 357011 Pt XI, Line 4b Fundraising Expenses $1,688 Pt XII, Line 2d Fundraising Expenses $1,688 Pt XII, Line 4b Rounding -$2 Toasting Tanner 17457 15769 1688 1688 Vivis Drive 27330 27330 0 0 1 11605 11605 0 56392 54704 1688 1688 1688 0 true Children's Hospital Philadelphia 3401 Civic Center Blvd Philadelphia PA 19104 231352166 501 (c) (3) 50000 0 N/A N/A Research Washington University School of Medicine 660 S Euclid Avenue Saint Louis MO 63110 430653611 501 (c) (3) 30000 0 N/A N/A Research University of Oregon 1585 E 13th Avenue Eugene OR 97403 936015767 501 (c) (3) 55874 0 N/A N/A Research Orphan Disease Center at University of Pennsylvania 125 South 31st Street Philadelphia PA 19104 231352685 501 (c) (3) 13400 0 N/A N/A Research 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 42544 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 24e Donor Management 17539. 12277. 4385. 877. Form 990, Part IX, Line 24e Family Conference 95197. 95197. 0. 0. Form 990, Part IX, Line 24e Family Support 29667. 29667. 0. 0. Form 990, Part IX, Line 24e Gifts 1685. 0. 0. 1685. Form 990, Part IX, Line 24e Printing 2980. 0. 2235. 745. Form 990, Part IX, Line 24e Supplies 2295. 0. 2295. 0.