2024-03-28T17:38:14Z 2023-12-31 990EZ 2023-01-01 874703593 SHINE SYNDROME FOUNDATION SHIN 8019800396 PO Box 1273 Pleasant Grove UT 840626200 Melanie Queen Treasurer 8019800396 2024-03-28 2023 2023-04-26 12:10:37Z X X www.shinesyndrome.org X X 85055 X 5000 80055 80055 882 -882 84173 146504 52 2387 148943 -64770 99005 34235 99005 34235 0 0 99005 34235 99005 34235 Our mission is to improve the quality of life for children and families impacted by SHINE Syndrome through supporting collaborative research among international medical professionals, nurturing a family community, and raising worldwide awareness. We received a grant from #RAREis Global Advocate Grant. Now AMGEN The #RAREis Global Advocate Grant was established in 2022 to support the rare disease community by providing financial assistance to global advocacy groups working to advance, educate and address the needs of the community. The grant covered costs to translate, print medical concentrations documents and to ship the documents to our members. In an effort to support the SHINE syndrome community with their doctors. 5000 The rest of the donations were individual donations to support our research programs. One of our donations was from a community outreach. It was also part of the marathon donations. 10000 The rest of the donations were individual donations to support our research programs. One of our donations was from a board member. He matched donations for the marathon. 15000 0 Laura Palmer Director, President 20.00 0 0 0 Marie-France Gervais Director, Vice President/Scientific and Clinical Relations 15.00 0 Melanie Queen Director, Secretary 10.00 0 Nate Palmer Director, Treasurer 10.00 0 Jusitn Neduchal Director, Fundraising 10.00 0 Courtney Roche Director, Patient and Family Engagement 10.00 0 Timothy Stuart Director, Board Member at Large 10.00 0 false false false false false 0 false false false false Melanie Queen PO Box 1273 Pleasant Grove UT 840626200 8019800396 false false false false false false false false false false false false NONE 0 NONE 0 true X University of Copenhagen Rigshospitalet Copenhagen DA Hebrew University Jerusalem IS 0 0 0 0 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Swine for SHINE Marathon 36205 36205 0 0 0 0 0 0 0 0 36205 0 36205 0 0 0 0 0 0 0 36205 Part I, Line 16 Advertising/Promotional 620.78 Bank Fees and Charges 510.00 Charitable Contributions 120.00 D&O Insurance 764.00 Dues & subscriptions 372.12