This latest grant from NA Advocacy USA brings the total funded for the project over three years to $250,000. While NA Advocacy USA is the lead grantor on the project, it is important to note that generous donations made by long term American supporters of The Advocacy for Neuroacanthocytosis Patients, the UK-based charity, have helped to make the grant possible.

The first two grants funded research involving brain tissue of VPS13A patients and yielded two scientific papers and several new observations. (See NA News Issues 42 and 43 at https://naadvocacy.org/na-news/ for details). Both papers were published in the prestigious Official Journal of the International Parkinson and Movement Disorder Society, in addition to the results being presented at various international scientific conferences over the past 3 years.

While the first two grants focused on VPS13A, the current grant will fund a parallel study with a focus on XK disease (McLeod syndrome). The work will, once again, be performed in the lab of Dr. John Crary in the Pathology Department at Mount Sinai School of Medicine under the guidance of Drs. John Crary and Ruth Walker (shown in photos to the right).

This research highlights the critical importance of brain tissue donations like that of Eric Koning. We are grateful to the Koning family and the other families and patients who made this often difficult decision.