In 2020, NA Advocacy USA successfully raised $50,000 from its Unlatch the Match appeal to meet a challenge grant of $50,000 from an anonymous donor. This resulted in a $100,000 award from NA Advocacy USA to the Icahn School of Medicine at Mt. Sinai in New York City for a promising brain research project called "Neuropathology of Neuroacanthocytosis." We again successfully raised additional funds to continue the grant beyond Year One in 2021-22 and are currently funding a 2024-25 grant.. We are so very grateful to our generous donors.

 

The project involves brain tissue from deceased NA patients, some of whom we actually know. That’s how committed many NA patients and their loved ones are to eradicating NA. No one wants to see future generations suffer with these terrible diseases that affect multiple body systems.

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We are incredibly pleased with the progress of the project to date. The first three years of research focused on brain tissue of VPS13A patients, but now the project is turning its focus on studying XK brain tissue, using the same protocols used on VPS13A. As a result of the ongoing research, new understandings of VPS13A resulted in two scholarly research articles published in Movement Disorders, the prestigious official Journal of the International Parkinson and Movement Disorder Society. We even made the cover in December 2023! We are hoping for comparable results with the XK study.

 

We are excited to be learning new and important information that helps further understand VPS13A (ChAc) and McLeod syndrome (XK). We need this critical research to continue. Your donations are making a very real difference.

 

Please consider a gift. You may use the DONATE button in the top right hand corner of the page to make your tax-deductible gift. Alternately, you may send funds to:

 

NA-USA, Inc.

2285 Harlock Road

Melbourne, FL 32934

 

We thank you!