2025-05-15T07:31:34-04:00 2024-12-31 990EZ 2024-01-01 872041980 Cure KCNH1 Foundation % Michaelle Jinnette CURE 6197420013 1928 Wandering Rd Encinitas CA 92024 Kevin Witt Director 2025-05-15 2024 2025-03-06 01:10:19Z X 1928 Wandering Rd. X X 193403 X 183806 1868 0 0 0 0 7729 3439 4290 0 189964 0 0 0 0 84637 84637 105327 114174 219501 114174 219501 0 0 114174 219501 114174 219501 Our mission is to urgently improve the lives of individuals and families affected by KCNH1-Related Disorders by accelerating research toward the development of effective treatments and a cure building connections within the KCNH1 patient and professional community raising awareness about KCNH1-related disorders and advocating for the needs of families affected by rare diseases. Research - Improving the lives of individuals and families affected by KCNH1-Related Disorders by accelerating research toward the development of effective treatments and a cure; benefits the entire KCNH1 community of approximately 100 currently contactable patients along with their families. 0 67736 Patient Engagement - Organizing the KCNH1 patient community in order to better support the families inform the research and prepare for future clinical trials. Hosted the first-ever in-person KCNH1 patient family and researcher conference; attended by over thirty patients caregivers family researchers in Los Angeles. 0 7869 Advocacy - Raising awareness about KCNH1-related disorders and advocating for the needs of families affected by rare diseases. 0 3212 78817 Michaelle Jinnette President 35 0 0 0 Noreen Haider Director 5 0 0 0 Kevin Witt Director 10 0 0 0 James Pearson Secretary 5 0 0 0 Joshua Yelsey Treasurer 5 0 0 0 Amy Finnigan Director 5 0 0 0 Meg Stacker King Director 5 0 0 0 false false false false false 0 false false false false CA Michaelle Jinnette 1928 Wandering Rd Encinitas CA 92024 6197420013 false false false false false false false false false false false NONE NONE true X 0 0 280793 50734 183806 515333 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 280793 50734 183806 515333 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 515333 0 0 486 1454 1868 3808 0 0 0 0 0 0 0 0 486 1454 1868 3808 0 0 0 0 0 0 0 0 0 0 0 0 0 0 281279 52188 185674 519141 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Part I, line 16 | Other Expenses:, Amount:| Advocacy - Payments made toward increasing KCNH1 patient advocacy and public awareness for KCNH1-related genetic disorders., $3212| Administration - This includes accounting software donation processing website CRM business software apps teleconferencing software etc., $5820| Patient Engagement Conference - Payments made to host first-ever in-person KCNH1 conference for patients families care-givers and researchers in December 2024., $7869| Research - Payments made to laboratories and a patient registry platform in order to advance research on KCNH1-Related Disorders and the development of effective treatments and a cure., $67736|