NoSCoS 2015 Congress

September 9-11, 2015, Clarion Hotel & Congress, Trondheim, Norway.

The Spinal Cord Injury Unit at St. Olavs Hospital in Trondheim will host the NoSCoS 2015 congress. The main topic of the congress will be 'Spinal Cord Injuries and Cardiovascular Health'. 

For information about the NoSCoS 2015 Congress: www.mctconference.no

ESCIF 2015 Congress and Assembly of Delegates

May 20-22, 2015, Maximus Resort (near Brno), Czech republic.

The European SCI Federation (ESCIF) Congress 2015 will be hosted by ParaCENTRUM Fenix in the Czech republic. The theme of the congress will be 'Employment of people living with SCI'. 

For information about the ESCIF 2015 Congress: www.escifcongress.org

ISCoS 2015 / SCI consumer workshop / Global SCI Consumer Network meeting

May 14-16, 2015, Montreal, Canada

54th Annual Scientific Meeting ISCoS, 4th ISCoS and ASIA joint scientific meeting.
The Fairmont Queen Elizabeth Hotel, Montreal, Canada.

The themes covered by the International Spinal Cord Society (ISCoS) 2015 meeting, please visit: www.iscosasia2015.org.

ISCoS – the worldwide organization for SCI clinicians and researchers – has decided to schedule consumer-led sessions at all future annual ISCoS meetings, starting in 2012. The proposal for this session in 2015 was accepted by ISCoS. For information about this consumer workshop: send an email to KAnderson3@med.miami.edu

In addition to this workshop the Global SCI Consumer Network also wanted to organise its annual off-programme meeting during these days in Montreal to discuss plans and actions for the global network. Because of insufficient progress within / from the network it was decided to cancel the annual GN meeting in 2015. Hopefully next year in Brazil.

For information about the global network: info@globalsci.net

For information about the ISCoS 2014 meeting: www.iscosasia2015.org

ASCoN 2014 Conference

The 13th annual Asian Spinal Cord Network (ASCoN) Conference will take place from 27 - 29 November 2014 in the BRAC-CDM, Khagon, Savar, Dhaka, Bangladesh. The Centre for the Rehabilitation of the Paralysed (CRP) in Bangladesh is going to co-host this ASCoN 2014 Conference. For further details regarding the programme and other information about the ASCoN 2014 Conference: www.ascon.info 

ISCoS 2014 / SCI consumer workshop / Global SCI Consumer Network meeting

September 2-4, 2014, Maastricht, the Netherlands

53st Annual Scientific Meeting ISCoS 2014.
The MECC Conference Centre, Forum 100, 6229 GV Maastricht.

The International Spinal Cord Society (ISCoS) 2014 meeting covered the following themes: physical capacity and fitness, consumer rights, ageing, orthotics and sexuality.

ISCoS – the worldwide organisation for SCI clinicians and researchers – has decided to schedule consumer-led sessions at all future annual ISCoS meetings, starting in 2012. ESCIF's proposal for this session in 2014 was accepted. For information about this consumer workshop: www.escif.org

In addition to this workshop the Global SCI Consumer Network also organised its annual meeting during these days in Maastricht to discuss plans and actions for the global network. 

The ESCIF Congress 2014 was scheduled (see the information below) during the last workdays of August 2014 because this ISCoS Annual Scientific Meeting also took place in the Netherlands. The ESCIF Congress 2014 organisers were in contact with the ISCoS 2014 organisers and the Global SCI Consumer Network to create added value ESCIF 2014 / ISCoS 2014 / Global SCI Consumer Network meeting 2014 where ever possible.

For information about the consumer workshop and the meeting on the global network: info@globalsci.net

For information about the ISCoS 2014 meeting: www.iscos2014.org

ESCIF 2014 Congress and Assembly of Delegates

August 27-29, 2014, De Rijp (near Amsterdam), the Netherlands.

The European SCI Federation (ESCIF) Congress 2014 was hosted by the Dutch SCI Association. The theme of the congress was 'Healthy Ageing: what can be done?' Around 100 people participated – people living with a SCI, SCI professionals, researchers and other experts – from many countries in Europe and beyond. This because the topic 'Healthy Ageing' is of great general interest and also – because of the increased life expectancy of people living with SCI – new challenges / problems arise in the field of their health, participation and quality of life in the long(er) run. The congress was a success and interesting both for younger people with 15-20 years' SCI experience and older people (>65 years) with SCI. It also inspired associations regarding the question: 'What can a national SCI association do to facilitate healthy ageing of people living with SCI'.

The ESCIF Congress 2014 was scheduled during the last workdays of August 2014 because 2-4 September 2014 the 53th ISCoS Annual Scientific Meeting took place in Maastricht, the Netherlands. The ESCIF Congress 2014 organisers were in close contact with the ISCoS 2014 organisers and the Global SCI Consumer Network to create added value ESCIF 2014 / ISCoS 2014 / Global SCI Consumer Network meeting 2014 where ever possible.

For information about the ESCIF 2014 Congress: www.escif.org

ASCoN 2013 Conference

The 12th annual Asian Spinal Cord Network (ASCoN) Conference took place from 15 - 17 November 2013 in Coimbatore, Tamil Nadu, India in conjuction with ISSICoN 2013. For further details regarding the programme and other information about the ASCoN 2013 Conference: www.ascon.info 

ISCoS 2013 / SCI Consumer Workshop / Global SCI Consumer Network meeting

October 28-30, 2013, Istanbul, Turkey.

52st Annual Scientific Meeting ISCoS 2013.

The International Spinal Cord Society (ISCoS) 2013 conference covered areas of interest to all involved in the management of spinal cord injuries. The programme covered resource management in all settings, acute spinal cord injuries management with an emphasis on disaster situations, primary care, rehabilitation, prevention and education.

ISCoS has decided to schedule consumer-led sessions at all future annual ISCoS meetings, starting in 2012. ESCIF's proposal for this session in 2013 was accepted by the ISCoS scientific committee. The title of the workshop was ‘Organisation of SCI treatment, rehabilitation and follow-up: are ideas and models developed in high-resource countries relevant to medium and low-resource countries?' This Consumer Workshop was scheduled on October 28.

In addition to this workshop the Global SCI Consumer Network also organised its annual meeting during these days in Instanbul to discuss plans and actions for the global network. This additional meeting of the network took place on October 29 at the ISCoS 2013 congress venue.

Summary of the Global SCI Consumer Network meeting 2013

At this year's Global SCI Consumer Network (GN) meeting we welcomed GN ambassadors and other participants – about 25 people in total – from Asia, Australia, Europe, North America and Latin America. We are still missing representatives from Africa, but we are working on this!
Consumer network meeting 2013 
Jane Horsewell (from Denmark) welcomed all participants and gave a short introduction to (the history of) the network especially for any newcomers in the audience. Her presentation – see here (P1) – included information about the establishment of working groups, the “appointment” of ambassadors and other progress that has been made in the last year.
 
Then Shivjeet Singh Raghav (from India) gave an update – see here (P2) – about the activities of the ASCoN SCI consumer network in Asia including last year’s meeting in Kuala Lumpur and plans for the coming meeting in India. There have been a lot of developments regarding the national SCI consumer groups/organizations in the region. New groups/organizations have been established and the number of members per country is increasing rapidly. Concrete steps and actions are to be expected in the near future.
Next Bruno Landgraf das Neves (from Brasil) told us – see here (P3) – about building relationships between SCI consumer groups in Latin America. Bruno is a paralympic athlete and was supported during his presentation by Dr. Daniel Rubio de Souza from Saõ Paulo. They explained the general situation relating to SCI in Latin America and described the current status of the inter-group contacts in Latin America. Much of the presentation was based on the information gathered by Federico Montero, the GN ambassador in Latin America. There are plans for future activities to consolidate and extend the contacts among SCI consumer groups in Latin America.
 
Subsequently Peter Perry (from Australia) presented – see here (P4) – information about Spinal Cord Injuries Australia and their consumer initiatives in Australia. The National Disability Strategy and the National Disability Insurance Scheme are of great importance to the national SCI strategy in Australia and could be an example to other countries. SIA Australia is in contact with the ASCoN Consumer Network, was represented during their meeting in Kuala Lumpur and will also attend the coming meeting in India.
 
Thereafter Frans Penninx (from the Netherlands) and Sara Rubinelli (from Switzerland) told about – see here (P5)resources for online communication and the possibility of adding Paraforum (from Swiss Paraplegic Research) as a (resource) link on the GN website. Paraforum (www.paraforum.ch is to be launched on December 2, 2013) will be an interactive online platform dedicated to SCI and has the ambition to become an essential tool in the global communication between the members of the network – as well as a source of information about the network to other stakeholders in the global SCI community.
 
Finally Frans Penninx invited – see here (P6) – the audience to the meetings next year in the Netherlands. We have already agreed that the ISCoS meetings provide a good opportunity for members of the global network to meet. In 2014, the ISCoS meeting will be held 2-4 September in the Netherlands. The European Spinal Cord Injury Federation (ESCIF) is planning to hold its congress 27-29 August also in the Netherlands i.e. at the end of the week before the ISCoS meeting. This could provide an ideal opportunity to bring together the three groups – ISCoS members, ESCIF members and the global network ambassadors and partners.
 
After the presentations Kim Anderson (from the USA) asked for questions and comments from the audience, she chaired the discussion and together with Frans Penninx some conclusions were drawn. 
  • The issue about the different languages was raised. The GN website is only in English and Paraform will start in German, French, Italian (languages used in Switzerland) and English. Paraform will be monitored every day and important questions / answers / information will be translated i.e. available in these four languages. There is a tentative plan to add Spanish as the fifth language. Linking the GN website and Paraforum will be further investigated and developed.
  • Kim reminded the audience of the vision of the GN being made up of ambassadors representing their countries. The ambassadors identify, as a group, common issues/topics/needs deemed important to all SCI consumers, then they go back to their individual organizations and get full input in their native languages. 
  • The suggestion to ‘integrate’, for example, Google Translate will be seriously considered.
  • Burak Keskin (from Turkey) offers his help finding ambassadors in Turkey, and was “volunteered” as the first ambassador for Turkey by the audience, and regarding translating important information in Turkish.
  • The call was made to share more national / regional developments, information and policies. Jane Horsewell mentions as an example the survey used by Federico Montero in Latin America.  This could be helpful in generating contacts and key issues in each world region. She will enlist Federico’s help to distribute the survey in English. The collected key issues will be on the agenda of next year’s GN meeting.

Everyone is called to come to the Netherlands next year. We hope that there will be – besides ESCIF and ISCoS – a plenary GN meeting, as well as additional GN workgroup meetings, well prepared before August 2014 so we get (more) things done / organized / prepared. 

For information about the consumer workshop and the meeting of the global network:  info@globalsci.net

ANZSCoS 2013 Annual Scientific Meeting

August 21-23, 2013, Sydney, Australia.

The theme of the Australian & New Zealand Spinal Cord Society (ANZSCoS) 2013 Annual Scientific Meeting was 'New Solutions in a Changing World'. This is a topic that encompasses all aspects of the industry and brought together delegates in the specialised field of the management of persons with spinal cord impairment (paraplegia and tetraplegia). It had a multi-disciplinary focus and was of great interest to consumers, policy makers, case managers, basic scientists as well as all members of the healthcare team.

For information about the ANZSCoS 2013 Meeting: www.anzscos.au

ESCIF 2013 Congress and Assembly of Delegates

June 5-7, 2013, Nottwil, Switzerland.

The European SCI Federation (ESCIF) Congress was hosted by the Swiss Paraplegics Association. The theme of the congress was 'Living with SCI: communication, information and learning' – and, as the title suggests, was looking at various internet communication and information sources that are available (will soon be available) for people within the SCI community.

For information about / results from the ESCIF 2013 Congress: www.escifcongress.org

ASCoN 2012 Conference

The 11th annual Asian Spinal Cord Network (ASCoN) Conference was held November 29th – December 2nd, 2012 in Kuala Lumpur in Malaysia and was a great success. This conference brought together around 400 SCI professionals and 40 people living with SCI from Asia, Australia and the rest of the world. Frans Penninx attended on behalf of the Global SCI Consumer Network.

The conference focused on the professional development of health care personel involved with SCI care, the development of appropriate services for people with SCI and updates on current advancement in SCI care and prevention. On all 4 conference days there were dedicated sessions for people with SCI. Consumer workshops on 3 days and 1 day for an active rehab camp and wheelchair games on a special venue. Sometimes the room where the consumer workshops where held was too small because quite a few SCI professionals also attended the workshops about ‘Psychosocial Adjustment to SCI’, ‘Sexuality and Fertility after SCI’, ‘Consumer Networks’, ‘Peer training for Family Caregivers’ and ‘Experimental Treatments for SCI, What you should know’.

The workshop ‘Consumer Network’ provided the opportunity for the ASCoN Consumer Network and other SCI consumer representatives from Australia and Europe to meet and progress the objectives of the Global SCI Consumer Network. People with SCI from Bangladesh, India, Malaysia, Nepal, Thailand and Sri Lanka, from Australia, the Netherlands and Poland shared their national information and experiences. Sharing information regionally and globally was viewed a key to maintaining communication between organisations for people with SCI.

It was agreed that the most effective use of members’ time and commitment would be to have a concrete set of actions to complete before the ASCoN conference next year in Vietnam. Members were asked to put forward suggestions to Shivjeet Raghaw (see webpage 'About Us').

For further information about the ASCoN 2012 Conference: www.ascon.info

The official launch of the Global SCI Consumer Network took place on 5 September 2012 during the ISCoS annual meeting in London

official launch of the Global SCI Consumer Network

We were delighted to welcome both old friends and new to the launch at the Queen Elizabeth II Conference Centre in Westminster.

The European Spinal Cord Injury Federation was well-represented by delegates from UK and Scotland, the Netherlands, Italy, France, Norway, Sweden, Finland and Denmark; the ASCoN Consumer Network sent representatives from India, Sri Lanka and Malaysia, and was supported by our partners Livability Ireland.

The audience of around 60 people also included SCI consumers and representatives of SCI consumer groups from the United States, Canada, Australia and Latin America.

Last, but not least, the launch was attended by other stakeholders in the SCI community – namely representatives of ISCoS and our sponsors Coloplast and Hollister.

The launch meeting was introduced and led by Jane Horsewell and Frans Penninx who made a three-part presentation on the Global SCI Consumer Network describing the background to the initiative, discussing the issue of communication and outlining possible “next steps” in the development of the network.
See the following pdf files of the presentations:
GN Launch - Introduction

GN Launch - Communication
GN Launch - Next Steps

A lively question-and-answer session and discussion followed the presentation and this brought forth many good ideas on how to proceed. These ideas will be included in a proposed action plan that will be circulated later this autumn.

The action plan will certainly include the appointment of Global SCI Consumer Network ambassadors in different world regions and the formation of working groups to guide the Network through the next steps of its development.

ISCoS 2012 / SCI consumer workshop and “official” launch of the Global SCI Consumer Network

September 3-5, 2012, London, UK.

51st Annual Scientific Meeting ISCoS 2012 – Advances in SCI Management.
The Queen Elisabeth II Conference Centre, Broad Sanctuary, Westminster, London SW1P 3EE.

The International Spinal Cord Society (ISCoS) – the worldwide organisation for SCI clinicians and researchers – has decided to schedule consumer-led sessions at all future annual ISCoS meetings, starting in 2012. ESCIF's proposal for this session in 2012 has been accepted by the ISCoS scientific committee. 

The title of the workshop was ‘The SCI consumer agenda: global perspectives.’ This workshop was scheduled on Monday, 3rd September 2012. In addition to speakers from ESCIF, we were pleased with the participation of speakers from the ASCoN SCI consumer network and from US. For information about this consumer workshop: www.escif.org

In addition to this workshop the Global SCI Consumer Network was “officially” launched during the ISCoS meeting. We had a meeting to launch/discuss plans and actions for the global network. This additional meeting / "official launch" of the network was scheduled on Wednesday, 5th September 2012. See this invitation to the launch.

For information about the consumer workshop and the meeting on the global network:  info@globalsci.net

For information about the ISCoS 2012 meeting: www.iscos.org.uk

ESCIF 2012 Congress and Assembly of Delegates

May 23-25, 2012, Lucignano, Tuscany, Italy.

The theme of this congress was the impact of the on-going economic crisis on the lives of people with SCI. The aim was to exchange information and to reach agreement on what actions can be taken in ESCIF member countries. This congress was a success and a colleague / friend from India was present in Italy.

For information about the ESCIF 2012 Congress: www.ESCIF.org

ASCoN 2011 Conference

October 21-23, 2011, Colombo, Sri Lanka.

The Asian Spinal Cord Network (ASCoN) conference in Colombo was an undeniable success, attracting SCI professionals and consumers from all countries of South East Asia. ESCIF (Jane Horsewell and Frans Penninx) had been asked to arrange an SCI consumer workshop designed to highlight and articulate pressing issues on the SCI consumer agenda in Asia. Also the establishment of the Global SCI Consumer Network and the input from Asia was on the agenda.

ASIA / ISCoS 2011

June 4-8, 2011, Washington DC, USA.

50st Annual Scientific Meeting ISCoS 2011 – The State of Science in SCI Rehabilitation.

Jane Horsewell and Frans Penninx attended this ASIA/ISCoS meet in Washington DC. The primary aim of the trip was to promote support for the creation of the Global SCI Consumer Network among SCI consumers and organisations in America and Canada. Despite the “competition” from the scientific programme, the meeting was reasonably well-attended and the discussion was very lively. Many useful contacts were made with active SCI consumers who are willing to help ESCIF to promote the idea of a global network.

For information about this consumer workshop:  http://www.escif.org/ESCIF,,news&showNews=NEWSFYRDJA6142011114558

ISCoS 2010

October 29-31, 2010, New Delhi, India.

At the 49th Annual Scientific Meeting in 2010 of ISCoS, ESCIF raised the question of a global consumer network before an audience of both SCI consumers and professionals. Jane Horsewell made a presentation called: ‘Considering the benefits of a global SCI consumer organization’. The reaction was resoundingly positive and was the starting point for establishing the global network.

meeting iscos indiaSCI consumer workshop, ISCoS 2010, India
Panel from left: Dr Apichana Kovindha, Prof. Dajue Wang, Jun Wen, Prof. Ketna Mehta, Prof. Fin Biering-Sørensen, Jane Horsewell