2019-11-11T17:26:15-08:00 2018-12-31 JUDY L ARFA CPA PLLC 4265 SAN FELIPE 1100 HOUSTON TX 77027 990 2018-01-01 270950477 International Foundation For CDKL5 Research INTE 9705762740 P O Box 926 Wadsworth OH 44282 Amanda Jaksha Treasurer 9705762740 2019-11-09 true Judy L Arfa CPA P01070261 7132403315 2019-11-11 70.138.147.111 2019-11-11 17:26:08 PS P 8F72E1802C78938FD4E707A04890A8FFF88C15F4 8F72E1802C78938FD4E707A04890A8FFF88C15F4 2018 2020-03-31 21:24:44Z Amanda Jaksha 2228 Podtburg Cir Johnstown CO 80534 555571 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. 10 10 0 12 0 0 323231 416145 71000 5245 5013 -1276 -2149 327200 490009 214875 558849 0 0 0 5159 45757 248803 260632 807652 66568 -317643 913861 649889 29924 90508 883937 559381 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 797339 558849 0 A number of fundraisers were held in 2018. In addition, contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $558,849 were made during 2018 to fund research that will lead to a cure for this very debilitating disease in the near future. The Organization's goals include aggressive research, studies to improve the quality of life for children with CDKL5, and testing of compounds to identify neurologic modifiers. 797339 true true false false false false false false false false false false false false false false true false false false false true 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 10 10 false false false false false false false true true false false true true true true false false false false false CT MI X Amanda Jaksha 9705762740 2228 Podtburg Circle Johnstown CO 80534 X Karen Utley President 35.00 X X 0 0 0 Rick Upp Vice President 15.00 X X 0 0 0 Megan Strok 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 Kelly Grodzicki Director 1.00 X 0 0 0 Paul Miller Director 1.00 X 0 0 0 Kristin Kozera Director 1.00 X 0 0 0 Garrett Decker Director 1.00 X 0 0 0 Melissa Ralston Board Member Emeritus 1.00 X 0 0 0 0 false false false 0 209118 207027 59278 416145 Family Conference Income 611710 71000 0 0 71000 4140 0 4140 2422 1549 873 873 873 0 0 61058 209118 64013 -2955 0 -2955 Miscellaneous Revenue 900099 806 0 0 806 806 490009 71873 0 1991 X 483849 483849 75000 75000 80 80 0 0 5000 5000 0 0 74278 74278 0 0 3842 3842 0 0 141821 141821 0 0 2517 1485 302 730 Business Expenses 339 339 0 0 Business Registration 135 0 135 0 Bank Charges 3915 0 3915 0 Postage 2801 2801 0 0 14075 8844 802 4429 807652 797339 5154 5159 314759 342486 420128 98985 8523 11662 170451 196756 913861 649889 29924 90508 29924 90508 X 883937 559381 883937 559381 913861 649889 X -317643 -6913 236000 -236000 X false true X true false X 0 734812 294935 406107 323231 416145 2175230 0 0 734812 294935 406107 323231 416145 2175230 555016 1620214 3306 3699 2695 2879 4140 16719 0 2619 -3567 6089 2366 72679 80186 2272135 110256 0.71310 0.73660 X 0 0 0 Pt II Ln 10 Other Income Part II, Line 10 Description: Sales of Merchandise 2014: 6594. 2015: 3282. 2016: 7054. 2017: 3046. 2018: 2422. Description: Cost of Goods Sold 2014: -3975. 2015: -6849. 2016: -965. 2017: -680. 2018: -1549. Description: Miscellaneous Revenue 2018: 806. Description: Family Conference Income 2018: 71000. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 783109 -6913 236000 229087 554022 -64013 -64013 490009 1107665 236000 64013 300013 807652 807652 Pt XI, Line 4b Fundraising Expenses $64,013 Pt XII, Line 2d Fundraising Expenses $64,013 East Asia and Pacific Research 25000 Check East Asia and Pacific Research 50000 Check 2 false false false false false false Sands 55338 48813 6525 6525 Toast For Cure 91040 44160 46880 46880 4 120598 112945 7653 7653 266976 205918 61058 61058 61058 0 true Regents Univ of CA 1855 Folsom St San Francisco CA 94143 943067788 501 (c) (3) 25000 0 N/A N/A Research University of Pennsylvania 3451 Walnut St Philadelphia PA 19104 231352685 501 (c) (3) 190070 0 N/A N/A Research University of Nebraska 2200 Vine Street Lincoln NE 68583 470049123 501 (c) (3) 45000 0 N/A N/A Research University of Colorado 1800 Grant Street Suite 500 Denver CO 80203 846000555 501 (c) (3) 76279 0 N/A N/A Research NYU School of Medicine 550 First Avenue New York NY 10016 472613531 501 (c) (3) 60000 0 N/A N/A Research Boston Children's Hospital 1295 Boylstyon Street Boston MA 02215 530196580 501 (c) (3) 67500 0 N/A N/A Research Washington University School of Medicine 660 S Euclid Avenue Saint Louis MO 63110 430653611 501 (c) (3) 20000 0 N/A N/A Research 7 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 29512 Fair Market Value X Goods For Fundraisers 45 29766 Retail 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. Pt XI Value of Volunteer Services $236,000 Form 990, Part IX, Line 24e Donor Management 9191. 4228. 735. 4228. Form 990, Part IX, Line 24e Family Support 2099. 2099. 0. 0. Form 990, Part IX, Line 24e Memberships & Dues 1084. 1084. 0. 0. Form 990, Part IX, Line 24e Printing 199. 199. 0. 0. Form 990, Part IX, Line 24e Telephone 670. 402. 67. 201. Form 990, Part IX, Line 24e Volunteer Expenses 832. 832. 0. 0.