NA USA completes $100,000 fundraising drive

NA USANeuroacanthocytosis Advocacy USA (NA-USA) announced its “Unlatch the Match” fundraising campaign on November 30, 2020, coinciding with #Giving Tuesday. The organization’s ambitious goal was to raise the $100,000 needed to fund Year 1 of the Neuropathology of Neuroacanthocytosis Project, a research effort examining brain tissue of ChAc and McLeod patients, to be carried out at the Icahn School of Medicine at Mount Sinai in New York. Ruth Walker, John Crary and Amber Tetlow are the primary people working on this project. (See Research).


The fundraising appeal was helped along with a dollar for dollar match up to the first $50,000; hence the title of the fundraiser “Unlatch the Match.”


We are pleased to report that the full $100,000 was raised by mid-February. By April 15th, a grant agreement was fully executed between NA-USA and the Icahn School of Medicine, and the first $60,000 grant draw was sent.


Thank you to all who organised and participated in this stupendous undertaking!

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