INTRODUCING THE GLOBAL SPINAL CORD INJURY CONSUMER NETWORK Jane Horsewell President ESCIF ISCoS, Istanbul,

o To establish an active global network of consumer groups and organisations of people living with spinal cord injury o To learn from each other, sharing experience and knowledge o To impact the SCI agenda worldwide Why this initiative?

o “Developed world”: people living with SCI have formed national self-advocacy organisations, but with limited inter- group collaboration o “Developing world”: national groups are less common, although there are many small group initiatives often led by charity organisations or NGOs Current global situation

o To promote the development of SCI consumer groups and organisations in countries where resources are limited o To promote collaborations between organisations in resource-strong countries Challenges … and there are many

o To encourage cross-national / world regional collaborations by providing opportunities to meet and discuss Challenges cont. o To encourage cross-national / world regional collaborations by providing opportunities to meet and discuss o To encourage cross-national / world regional collaborations by providing opportunities to meet and discuss

The journey so far …

The journey so far … In 2012 we held the official launch of the Global SCI Consumer Network at the ISCoS meeting in London, UK.

We have formed three working groups o Future organisation of the network o Fundraising and sponsorship o Development of the website Since the launch...

At the ASCoN meeting in November 2012 Shivjeet Singh Raghaw was appointed Chairman of the Consumer Committee. Federico Montero has worked to establish contacts in Latin America. Since the launch...

o The working groups must present concrete proposals regarding their areas of responsibility by mid-2014 o The Ambassadors in Asia, North America and Latin America should draw up key points for the SCI agenda in their region by mid-2014 o All Ambassadors should start to plan for the meetings in The Netherlands 2014, Canada 2015 and Brazil 2016 Proposals for next steps...

o To further collaboration between SCI consumer groups worldwide o To collaborate with SCI professionals on SCI issues including management, research, prevention, education o To work with all stakeholders in the SCI community to improve quality of life of people living with a spinal cord injury We must not forget collaboration