A new collaboration to look at data about NA dating to the 1960s is to be undertaken following a talk earlier this year at Ohio State University by Adrian Danek.

One of the earliest descriptions of what is now called neuroacanthocytosis was the subject of discussion after a guest lecture Adrian Danek gave at the university in Columbus, Ohio in March 2017. Adrian spoke about "Neuroacanthocytosis, an overview (McLeod syndrome and chorea-acanthocytosis)" during Neurology Grand Rounds, on the invitation of Prof. Douglas Scharre.

The continued possibility of chorein Western blot testing, as recently funded for another year through a donation from the Advocacy, received much interest. This inexpensive possibility to explore differential diagnoses in conditions of uncommon neurological presentations are of great help and may shorten the time to diagnosis in countries where DNA testing cannot be performed.

The connection of the two professors of cognitive neurology, Adrian Danek from LMU Munich and Douglas Scharre from OSU, had come about as Prof. Scharre apparently was the last academic neurologist in touch with members of this early neuroacanthocytosis family. It had originally been described in the 1960s by Irving M. Levine from the Boston Veterans Administration hospital, augmented by results from a 1966/67 study of family members at the National Institutes of Health in Bethesda, Maryland.

Now, Scharre and Danek have started a collaboration to follow up the data and publish a summary of all findings in Levine's family in the light of recent genetic knowledge about the neuroacanthocytosis syndromes. It is unknown if affected family members are still alive, but they would be most welcome to get in touch with either of the two neurologists.

Please contact Adrian Danek or Professor Scharre directly or contact the Advocacy and we'll put you in touch.