2024-05-09T05:50:13-04:00 2023-12-31 990EZ 2023-01-01 843711526 NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED % Joyce Willard Williford NEUR 3212434545 2285 HARLOCK RD MELBOURNE FL 329347666 Joyce Willard Williford President 2024-05-09 false Joyce Willard Williford XXX-XX-XXXX 2023 2023-04-26 12:10:37Z X X X 40643 X 40619 24 0 0 0 40643 17500 132 17632 23011 44924 0 67935 44924 67935 44924 67935 44924 67935 The primary purpose of this corporation is to operate exclusively for charitable purposes and in furtherance of such goals is authorized to do any or all activities which it is empowered to do under the Articles of Incorporation and Florida law. No activities will be allowed which would jeopardize the corporation's tax-exempt status or otherwise be inconsistent with its classification as an organization described in sections 501 c3 of the Internal Revenue Code. The specific purposes of the corporation is to support patients with neuroacanthocytosis-related diseases and their caregivers to promote awareness of neuroacanthocytosis-related diseases and to support research aimed at alleviation of said diseases. In 2023 we continued to distribute grant payments to the Icahn School of Medicine for a brain tissue research project called "Neuropathology of Neuroacanthocytosis." Both of the diseases this organization represents - VPS13A formerly called chorea-acanthocytosis and XK disease formerly called McLeod syndrome are ultra rare diseases with only a handful of patients in the USA. The brain study represents the first look at human brain tissue of patients who had the disease. 17500 0 In general we provide non-financial support to patients with these two diseases. We do this via social media regular Zoom forums presented by scientists and email and phone. These is no cost associated that is paid by the organization. 0 0 Susan Wager President 4 0 0 0 Joyce Willard-Williford VP Secretary Treasurer 4 0 0 0 Ginger Irvine Director 2 0 0 0 Ruth Walker Director 2 0 0 0 Robert Metzger Director 2 0 0 0 Julie Kerner Director 2 0 0 0 Ricky Ditzel Director 2 0 0 0 false false false false false false false false false Joyce Willard-Williford 2285 HARLOCK ROAD MELBOURNE FL 32934 3212434545 false false false false false false false false false false false NONE NONE true X 0 12040 114602 48449 40619 215710 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 12040 114602 48449 40619 215710 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 215710 0 0 19 17 24 60 0 0 0 0 0 0 0 0 19 17 24 60 0 0 0 0 0 0 0 0 0 0 0 0 0 12040 114621 48466 40643 215770 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Part I, line 10 | Activity:, Grantee Name:, Grantee Address:, Amount:, Relationship:| This was a payment on NA Advocacy USA's second grant to the Icahn School of Medicine for research on human brain tissue related to ultra rare diseases VPS13A and XK disease., Icahn School of Medicine Mt Sinai, "Annenberg 15th Floor Office 15-42 1468 Madison Avenue New York New York 10029-6574", $17500.00, None| Part I, line 16 | Other Expenses:, Amount:| PayPal Fees associated with PayPal donations, $132.00|