2024-08-17T21:00:03Z 2023-12-31 990EZ 2023-01-01 843343395 GLOBAL DARE FOUNDATION GLOB 2075900299 147 Cottage Rd Windham ME 04062 Kristie DeMarco President 2075900299 2024-08-17 true 2023 2024-08-08 14:25:15Z X https://www.defeatadultrefsumeverywhere.org/ X X 58756 X 58756 0 0 0 0 0 0 0 0 0 0 0 0 0 0 58756 53389 0 0 1775 0 0 6343 61507 -2751 177865 0 175114 177865 175114 0 0 0 0 177865 175114 0 0 177865 175114 Global DARE Foundations mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease by supporting research education initiatives awareness campaigns and advocacy Food Testing Program Global DARE Foundation has funded a pivotal Food Testing program at the Kennedy Krieger Institute to improve dietary management for individuals with Refsum Disease a rare genetic disorder causing the buildup of phytanic acid which leads to neurological and other health issues Effective management involves limiting phytanic acid intake through careful dietary choices This program tested 43 foods and 8 liquids for their phytanic acid content providing crucial data for making informed dietary decisions 23100 Refsum Mouse Model Study Global DARE Foundation awarded 60289 to the Kennedy Krieger Institute for a study on a mouse model of Adult Refsum Disease ARD and paid the first 30289 in 2023 This study aims to improve treatments for ARD a rare genetic disorder where the body cant properly break down a fatty acid called phytanic acid leading to harmful buildup and serious health issues Researchers are using a specially designed mouse model to test different diets and see how they affect phytanic acid levels The goal is to find safe and effective diet conditions that replicate ARD symptoms in mice without causing side effects seen in previous studies This work will help in developing better treatments by providing important data for future research on ARD 30289 0 Kristie DeMarco President 20.00 0 0 0 Susan Kuranoff Vice President 10.00 0 0 0 John DeMarco Treasurer 8.00 0 0 0 Kim Bruce Secretary 2.00 0 0 0 Mark Liquorish Director 2.00 0 0 0 Darrell Gunter Director 2.00 0 0 0 Zahra Dhanani Director 2.00 0 0 0 Heidi Page Director 2.00 0 0 0 Marissa Rossouw Director 2.00 0 0 0 Peter Armstrong Director 2.00 0 0 0 Donald Samulack Director 2.00 0 0 0 Magen Sears Director 2.00 0 0 0 false false false false false false false false false ME Kristie DeMarco POBox 865 Windham ME 04062 2075900299 false false false false false false false false false false false NONE NONE true X 0 0 10281 43785 104106 67917 58756 284845 10281 43785 104106 67917 58756 284845 3260 6942 7532 10836 18171 46741 3260 6942 7532 10836 18171 46741 238104 10281 43785 104106 67917 58756 284845 0 0 0 0 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Schedule O: Part 1.10. Grants and similar amounts paid: Global DARE funded the following two grants in 2023: 1. Food Testing Program: Global DARE Foundation has funded a pivotal Food Testing program at the Kennedy Krieger Institute to improve dietary management for individuals with Refsum Disease, a rare genetic disorder causing the buildup of phytanic acid, which leads to neurological and other health issues. Effective management involves limiting phytanic acid intake through careful dietary choices. This program tested 43 foods and 8 liquids for their phytanic acid content, providing crucial data for making informed dietary decisions. 2. Refsum Mouse Model Study: Global DARE Foundation awarded $60,289 to the Kennedy Krieger Institute for a study on a mouse model of Adult Refsum Disease (ARD) and paid the first $30,289 in 2023. This study aims to improve treatments for ARD, a rare genetic disorder where the body cant properly break down a fatty acid called phytanic acid, leading to harmful buildup and serious health issues. Researchers are using a specially designed mouse model to test different diets and see how they affect phytanic acid levels. The goal is to find safe and effective diet conditions that replicate ARD symptoms in mice without causing side effects seen in previous studies. This work will help in developing better treatments by providing important data for future research on ARD. Part 1.16. Other expenses: The other expenses included primarily board training, conference expenses, NORD membership, bank fees, donor management system, post office box expense, teleconferencing service and website expenses.