2025-08-11T13:33:02-04:00 2024-12-31 208342587 Michael Terpening CPA 5629 Figarden Dr Ste 101 Fresno CA 93722 990 2024-01-01 842748218 KCNT1 SLACK EPILEPSY FOUNDATION INC % Justin West KCNT 9492689771 32531 N Scottsdale Rd 105-530 Scottsdale AZ 85266 JUSTIN WEST President 9492689771 2025-07-28 false true MICHAEL TERPENING CPA P00369645 5592996686 2025-08-11 X 2024 2025-03-06 01:10:19Z KCNT1 SLACK EPILEPSY FOUNDATIO 719180 false X X 2019 AZ Mission: KCNT1 Epilepsy Foundation accelerates the development of better treatments for KCNT1-related epilepsy and a cure by awarding pilot grants, funding research, making research assets available to qualified scientists and clinicians and organizing the community 10 9 0 0 0 357578 686337 0 6679 32843 0 364257 719180 20500 15546 0 0 0 26064 101048 202625 121548 218171 242709 501009 505139 1006148 0 505139 1006148 Mission: KCNT1 Epilepsy Foundation accelerates the development of better treatments for KCNT1-related epilepsy and a cure by awarding pilot grants, funding research, making research assets available to qualified scientists and clinicians and organizing the community false false 151905 The KCNT1 Epilepsy Foundation supports the development of treatments and a cure for KCNT1-related epilepsy by funding scientific research and facilitating collaboration across institutions. In 2024, we awarded multiple pilot grants and sponsored research agreements, including a $14,996 installment of a $30,000 grant for a medical record study analyzing KCNT1 patient data. Projects funded focused on gene therapy, disease modeling, and pharmacological screening, with proposals selected through a peer-reviewed process led by our Scientific Advisory Board. We also partnered with the University of Pennsylvania to lead a joint fundraising campaign for KCNT1 research. While the foundation did not directly receive or manage the $38,667 raised, we played a central role in campaign planning, donor engagement, and identifying funding priorities. These funds were matched by a $30,000 grant from Penn and awarded to researchers at the University of California and UC Davis MIND Institute to support translational studies using rodent models of KCNT1-related disorders. In addition to funding, we provided approved researchers with access to key data assets, such as genetic and cellular models, to accelerate discovery. All activities align with our mission to reduce the time to effective treatments for affected children and families. 151905 true true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 10 0 true 0 false false false false false false false false false false false false false false false false false X 10 9 false false false false false false false true true false false true true true true true false false false false NH X Sarah Drislane 9492689770 32531 N Scottsdale Rd Ste 105-530 Scottsdale AZ 85266 X Sarah Drislane Executive Director 60.00 0.00 X 0 0 0 Owen Billman Chairman 3.00 0.00 X 0 0 0 Jason J Kaufman Director 0.25 0.00 X 0 0 0 Morrisette Royster Director 0.25 0.00 X 0 0 0 Joseph Riculli Director 0.25 0.00 X 0 0 0 Dewey McLin Director 0.25 0.00 X 0 0 0 Justin West President 10.00 0.00 X 0 0 0 Margot Goodkin Secretary 0.25 0.00 X 0 0 0 Norman Metcalfe Treasurer 2.00 0.00 X 0 0 0 Samantha MacMechan Vice Chair 0.25 0.00 X 0 0 0 0 0 0 0 false false false 686337 686337 32843 32843 0 719180 32843 0 0 X 15546 15546 5884 5884 390 390 3753 3753 13175 13175 10944 9193 1751 5464 357 3716 1391 13513 13513 1422 1422 30912 20434 731 9747 1600 1600 Research and treatment 76856 76856 Registry and biobank 21316 21316 Patient support and educatio 6219 6219 Clinical Trial Readiness 7927 7927 3250 3250 218171 151905 40202 26064 505139 1006148 505139 1006148 0 0 X 505139 1006148 505139 1006148 505139 1006148 501009 0 X false false false X 30941 81829 176451 357578 686337 1333136 30941 81829 176451 357578 686337 1333136 80719 1252417 6679 32843 39522 1372658 0.91240 0.90210 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Form 990 governing body review Part VI line 11 A copy of the 990 is provided to the board of directors for review and approval prior to filing the return Officer director etc mailing address Part VI line 9 Officers and directors can be contacted at the organizations mailing address Conflict of interest policy compliance Part VI line 12c The organization has a conflict of interest policy Governing documents etc available to public Part VI line 19 Available upon request List of other expenses Part IX line 24e Patient support, education and CRM Database