A tribute to Glenn Irvine: your memories and ours
By now, most of you in the NA community will know that Glenn Irvine, husband of Ginger, father of NA patient Alex, and founder of the Advocacy for Neuroacanthocytosis Patients, died of cancer in March of this year, leaving those who loved him shocked by the terrible suddenness of his decline.
It is impossible to sum up in a few words how bereft Glenn’s death has left us. But we are extremely grateful and comforted by the avalanche of memories and reflections his friends sent to us in reply to the news.
Next NA meeting set for University of Michigan
The next NA Meeting is to be held on 13-15 May 2016 at the University of Michigan in Ann Arbor, Michigan. To expand the pool of ChAc researchers, accomplished basic and translational researchers from outside the field have been invited and will subsidize attendance of a cadre of talented junior investigators, who will be full participants in the meeting. The small size, workshop format, and interdisciplinary nature of the meeting will maximize participant interactions, and the formal sessions and workshop will be enhanced with social events and a poster session.
Sponsored events in May 2015 garner vital funds for NA research
Each year the month of May brings the Chelsea Flower Show to London, but in North Wales the Hawarden Walk has become the local attraction, with this annual sponsored trek supporting the Advocacy and the Epilepsy Society in the UK. Gill and Gordon Parry have organised this event for many years and attract a large group of walkers who gather to walk the trails on the Gladstone Estate. After the collection of Gift Aid, this year's walk in May 2015 will have raised approximately £3000 for NA. Many thanks to all.
Charity Craft Fair planned for London, 6-7 November
There will be another Charity Craft Fair in London 6 and 7 November on behalf of NA. Many of the craft people involved in last year's event will return and new artists will appear. Jane and Jill Willingale of Loudware will have more exciting jewellery and Rob Turner will bring his china. See the NA website for further details. http://www.naadvocacy.org
Talented craft-makers support NA research
Many friends of the Advocacy joined the talented craft makers last year on 5th and 6th of December 2014 for a display of beautiful works suitable for Xmas gift giving. The efforts of dedicated supporters of NA raised nearly £1000. Thank you all!
Two new reports are now available from "New Frontiers in Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation: From Benchside to Bedside," the NA symposium with took place last November in Stresa, Italy.
The reports, put together by Ruth Walker and published by the Movement Disorder Society and in the journal "Tremor and other Hyperkinetic Movements", are must-reads for all affected, interested and involved in any way with this ultra rare disease.
The first article is a broad overview of the Stresa meeting.
This article in the Tremor Journal provides a compilation of all the abstracts from the meeting.
Thank you Ruth!
8th European Plenary Meeting of European Huntington's Disease Network
The 8th European Plenary Meeting of the European Huntington's Disease Network last September 2014 was one of the last symposia Glenn was able to attend before his death.
Glenn and Ginger travelled together to Barcelona to attend the meeting, where over 900 people gathered to share updates of research and care of patients.
Outgoing Network President Bernhard Landwehrmeyer summarised 10 years of the organisation and reiterated that the immediate goal for HD families, scientists, clinicians and industry is to find ways of intervening in the disease before the onset of most of the symptoms. To read the report of the meeting see https://www.euro-hd.net/html/ehdn2014
Ginger and Glenn spoke to many patients and families and benefitted from the small sessions addressing the issues most useful for NA patients/families. They also displayed a poster about NA and spread the word about a movement disorder disease similar to Huntington's.
Alejo Montoliu, Barcelona; Monterros family of Spain; Mike Koutis in Canada; Two patients' families in Puerto Rico; Ana in Madrid; Silvia Chuiz and sister Frederica in Italy; Parry family in Wales; Mark Willard