2024-06-26T12:33:44-07:00 2023-12-31 990EZ 2023-01-01 475103254 KAILAS KOMFORT KAIL 8587754247 12858 Starwood Lane San Diego CA 92131 Sherri Mellos Chief Executive Officer 8587754247 2024-06-19 Sherri Mellos 999009999 1 1 11 0 AAL2 2023 2023-04-26 12:10:37Z X X www.kailaskomfort.org X X 55370 X 12518 0 0 0 0 0 0 0 39303 3212 36091 3549 666 2883 0 51492 0 0 0 0 0 8520 77818 86338 -34846 45648 0 10802 45648 10802 0 0 0 0 45648 10802 0 0 45648 10802 Kailas Komfort was created to provide comfort to children and adults diagnosed with a rare autoinflammatory bone disease called Chronic Recurrent Multifocal osteomyelitis or CRMO, to bring awareness, and to support families affected by the disease. We ship care packages to kids and adults with CRMO and their families, provide educational materials on CRMO and organize a large awareness event each year. Sent out care packages to 246 children and adults newly diagnosed with CRMO through our care package program; Sent out 49 Uplift care packages to children diagnosed with CRMO going through an extremely difficult time, either physically or mentally; Sent out 230 Pain Care devices to children with CRMO receiving injections/infusions for treatment; Sent out 17 sibling care packages through our Sibling Program; Sent out 14 Parent packages through Family Program; Sent out 255 medals of strength to children with CRMO; Provided education resources to countless families; Organized and hosted the CRMO Awareness 5K which was attended by 642 registrants. 0 15969 Donated funds to CRMO Research Fund at Seattle Children's Hospital to support the CHOIR Registry. Since 2018, the CHOIR registry has grown from one single site to 17 sites across nine countries and five continents as of July 2023. A total of 375 patients have been enrolled, and a total of 3,123 individual clinical visits have been recorded. Among these patients, 115 were diagnosed more than five years ago. At the most recent visit, 60% of patients still needed to take their second-line treatments. Half have minimal or no active symptoms. As families always ask, can we predict who may not need medications after taking medications for a while? Do certain treatment strategies, i.e., combining medications early on and aggressive treatment right after the diagnosis, translate into better outcomes? This year's donation will be used to support data harvesting and statistical analysis to help answer these questions and use our current dataset to design a larger-scale study. 0 61849 77818 Sherri Mellos Executive Director 5 0 0 0 Sila Ha Secretary 0.5 0 0 0 Sandy Kuhn Loveall Chief Financial Officer 0.5 0 0 0 Kaila Mellos President 5 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Sherri Mellos 12858 Starwood Lane San Diego CA 92131 8587754247 0 0 0 0 0 0 0 0 0 0 0 NONE NONE 1 X 26225 42167 53869 52486 51821 226568 6576 3520 2913 9143 3549 25701 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 32801 45687 56782 61629 55370 252269 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 252269 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 0 0 0 0 32801 45687 56782 61629 55370 252269 1 1 0 0 X CRMO Awareness 5K 39303 0 39303 0 0 0 0 0 3212 0 0 39303 0 39303 0 0 0 0 0 3212 3212 36091 Form 990-EZ, Part I, Line 16 Description;Amount^Cost of supplies and materials for care packages sent out in 2023;15969|Donation to Seattle Children's Hospital CRMO Research Fund;61849^Total;77818^ Attempted to file an extension before midnight (PT) on June 17 (deadline extended to June 17 as we are a California non-profit).