Neuroacanthocytosis Advocacy USA

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 corporations 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 2025 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. These diseases are ultra-rare. XK disease has a 1:10,000,000 prevalence and VPS13A has a 1:1,000,000 prevalence worldwide.

We supported the bi-annual International Symposium on Neuroacanthocytosis Diseases in Lausanne Switzerland which brought together patients families and caregivers researchers and clinicians from around the world updates on the latest research and also a program to benefit 15 patients and families who were able to attend https: naadvocacy.org symposia .

Neuroacanthocytosis Advocacy USA is a 501(c)(3) nonprofit (EIN 84-3711526) based in Melbourne, FL.