A tribute to Glenn Irvine

Glenn Irvine had founded the Advocacy for Neuroacanthocytosis Patients and was an inspiration for those affected by chorea-acanthocytosis, McLeod syndrome and related neurological conditions that may be associated with abnormally spiked red blood cells (acanthocytes).

Written by adrian_danek, published 12 days ago.

Glenn Irvine who had passed away March 6, 2015, at his home in London, for 15 years had been a friend of many of us who are interested in the enigmatic condition of neuroacanthocytosis. With his wife Ginger he had founded the Advocacy for Neuroacanthocytosis Patients (www.naadvocacy.org) because of their daughter´s suffering from chorea-acanthocytosis. Recently they gave an excellent account of their experience from the patient and family perspective: " An Ultra-rare Disease? Where Do We Go from Here? " (Tremor Other Hyperkinet Mov. 2013;3 -www.tremorjournal.org/index.php/tremor/art...

The Irvines´ energy and support was essential for organizing the first ever international meeting devoted to neuroacanthocytosis in 2002. With an open-minded and global perspective, Glenn helped shape all meetings since as well as the international diffusion of knowledge about neuroacanthocytosis syndromes, quickly sending conference proceedings volumes to those interested. His presence was to be felt as vivid as ever at the most recent meeting, the seventh, in Stresa, Italy, last autumn. As always, he was much at ease discussing with the specialists and Glenn and his family acted as a true patient advocates. Impressions of the Stresa meeting are available on the web (https://www.youtube.com/watch?v=afhUdcI-yvk) as are the abstracts of that truly promising gathering of clinicians and basic scientists (www.tremorjournal.org/index.php/tremor/art... The Irvines´ financial support is the basis of the free diagnostic Western blot that shortens the intervals until diagnosis. Also, the advocacy´s support helped and helps to perform a number of basic science studies on the ultra-rare diseases of neuroacanthocytosis.

Glenn´s enthusiasm for research in a spirit of collaboration should continue to guide us.