2026-03-18T08:42:40-04:00 2025-12-31 990EZ 2025-01-01 822116961 Coffin-Siris Syndrome Foundation COFF 7205149904 11611 106th Ave NE Kirkland WA 98034 Kristen McGraw Treasurer 6098658598 2026-03-19 false 2025 2025-03-06 01:10:19Z X coffinsiris.org X X 151428 X 110896 40425 107 0 0 0 151428 14000 5682 100197 119879 31549 206160 0 237709 206160 237709 206160 237709 206160 237709 Our mission is to support connect and inform the Coffin-Siris Syndrome community as well as promote and fund CSS-related research. CSSF Annual Conference -Provides an annual forum for family to gather socialize take part in learning opportunities and hear from experts. In 2025 124 families including 94 people with CSS and a total of 380 individuals attended the CSSF Conference in Denver CO 0 89972 Community Support - Provide outreach and support to CSS families undergoing treatments or hardships. We sent 23 meals and care packages to families whose loved ones were sick or in the hospital. 0 3015 CSS Registry Support - Provided financial support to Seattle Childrens Hospital where the global CSS registry is maintained 14000 0 92987 Carissa Robinson Chair 10 0 0 0 Kristen McGraw Treasurer 5 0 0 0 Gaylen Mohre Advocacy-Fundraising 5 0 0 0 Becky Dubay Community Development 5 0 0 0 Katie Kneisel New Diagnosis - Social Media 5 0 0 0 Parrish Burgess Conference 5 0 0 0 Simon Gale Operations - Secretary 5 0 0 0 false false false false false false false false false WA Kristen McGraw 30 Moss Ave Westfield NJ 07090 6098658598 false false false false false false false false false false false NONE NONE true X 56287 77009 81161 180930 110896 506283 0 0 0 24920 40425 65345 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 56287 77009 81161 205850 151321 571628 0 0 0 0 0 0 0 0 0 19920 35425 55345 0 0 0 19920 35425 55345 516283 11 29 115 176 107 438 0 0 0 0 0 0 11 29 115 176 107 438 0 0 0 0 0 0 0 0 0 0 0 0 56298 77038 81276 206026 151428 572066 0.9025 0.9451 0.0008 0.0007 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Part I, line 10 | Activity:, Grantee Name:, Grantee Address:, Amount:, Relationship:| Research Grant, Samantha A Vergano MD FAAP FACM, "4800 Sand Point Way NE Seattle WA 98105", $14000.00, None| Part I, line 16 | Other Expenses:, Amount:| CSSF Conference, $89972.00| Community Support - care packages, $3015.00| Adaptive Equipment Support -AAC devices and Boards, $1329.00| Administration - website taxes insurance zoom bank fees, $5881.00|