Brain Awareness Week and One Man's Crusade
national |
health / disability issues |
press release 
Thursday March 13, 2008 17:17
by Ann Keilthy - Parkinson's Association of Ireland and its PALS Branch for younger peole with Parkinson's and their
youngparkinsons at eircom dot net
087 2853117
Tom is a metaphor for this week
We have had a week of events around the theme of the brain, and awareness of the 700.000 people in Ireland with a brain disorder ranging from Migraine, Acquired Brain Injury to MS and Parkinson's and Alzheimer's, all events coordinated through the Neurological Alliance of Ireland. This week, Internatinal Brain Awareness Week has received a huge amount of publicity, focussing as it has on personal experiences, and an honest look at the present state of services for those with a neurological disorder in Ireland - through the media - TV, radio, newspapers, the internet, and conferences and meetings. On Sunday (March 16th), the last day of Brain Awareness Week, the PALS branch of the Parkinson's Association (the branch for those diagnosed at a younger age) have a special meeting, in the Marine Hotel in Sutton at 3pm on Sunday March 16th, which is an open meeting because of its relevance to the Week, and indeed because it is testimony to the strength of the human spirit.
Tom Isaacs repeats to anyone who listens: "I want to be known as the man who used to have Parkinson's". That sentence dictates what has become his life's work - for Tom actively campaigns for better services, with a specific focus - fundraising for research into promising avenues that will finally rid him and others of the neurological disorder.
He walked around Britain's coast in 2003 and raised over £350,000 for research. Together with David Jones, Ex Chairman of NEXT, and others, he founded a charitable trust called Cure Parkinsons - website at www.cureparkinsons.org.uk - and one of their most recent beneficiaries is Professor Jonathan Brotchie, who is Senior Scientist at the Toronto Western Hospital, Toronto. His laboratory focuses on characterising the brain mechanisms underlying movement disorders such as Parkinson’s disease. His research has been particularly associated with pioneering the concept of non-dopaminergic treatments for Parkinson’s disease with a trial about to start on a product called Cogane which Tom says is particularly interesting.
Tom was the UK charity person of the year in 2004, has Parkinson's for over 10 years (diagnosed at the age of 27), and is a powerful advocate for Parkinson's, and a charming and moving speaker. -He will talk about his journey with Parkinson's and also give a little information about the Cogane trial. The Marine Hotel in Sutton is the venue, on Sunday March 16th at 3pm. This is a meeting of the PALS branch of the Parkinson's Association but we are opening it to members of the public because Tom carries a message of hope, and has handled his own Parkinson's with a courage and an optimism that others have found inspiring.
Some of the projects that the Trust is assisting financially include:
- Partnering Michael J Fox Foundation to develop a treatment that inhibits a protein which is associated with the loss of brain cells in Parkinson’s. (USA)
- Funding new drug therapy development to manage symptom degeneration associated with Parkinson’s (Canada) - this is the one mentioned above.
- A three year study looking at the heterogenerity (varieties of the disease) of Parkinson’s to increase the effectiveness of clinical trials. (Cambridge, UK)
- Minimising the side-effects of Parkinson’s medications (Oxford, UK)
-An investigation into the efficacy of an exciting new system of delivery of regenerative molecules into the brain (Bristol, UK).
As mentioned this comes on the last day of Brain Awareness Week which endeavours to highlight issues surrounding the delivery of care to people with a neurological disorder here in Ireland (and International Brain Awareness Week was marked by similar events in 68 other countries this week), and ably coordinated by the Neurological Alliance of Ireland.. This umbrella group has produced three Standards of Care documents which eloquently and factually state the way forward in terms of the provision of an adequate and fair care package for those 700,000 of us with a neurological condition in Ireland. For more information on their work, visit www.nai.ie.
Tom will have copies of his book "Sake Well before Use" (50% of the proceeds go to charity) with him, and will take orders if he runs out, or it can be ordered from the Cure Parkinson's website - details below.
More information from Ann Keilthy, Honorary Secretary PALS and PRO Parkinson's Association of Ireland
via email youngparkinsons@eircom.net ,
Mobile 087 2853117
websites www.parkinsons.ie (Parkinson's Association),
www.pdpals.com PALS website),
www.cureparkinsons.org.uk (Cure Parkinson's Trust)