Newsletter July 2019
Dear ESCIF Colleagues
It is with great pride and excitement that I write to you for the first time as president of our organisation. That being said I am also aware of the history of our organisations and of all the work, relations and collaboration that Jane Horsewell did for the ESCIF, but also the friendships she has made across the member associations and other international associations. To take over these tasks after Jane will certainly be a challenge since we will miss her knowledge and experience. Also, the loss of Janez Trdina leaves a gap within the organization.
But I am lucky to have the support of Nuuttii Hiltunen and his experiences as well as our highly qualified secretariat which consists of Urs Styger and Déborah Knecht. Furthermore, the inclusion of three new members such as Bojana Gladović (SPIKS, Serbia), Mirjam Kanalec (Paraplegics Association of Slovenia, Slovenia) and Milan Kašiak (Paraplegické motivačné centrum, Slovakia), creates a strong board that will keep working in the spirit of European Spinal Cord Injury Federation.
The Congress completed by interesting keynotes speakers, workshops and sponsors was very successful. We want to thank all the people who contributed to this success. It would not have been possible without the great help from the Swedish organizations and Gunilla. There were 66 participants at the congress which we are very proud of and we want to thank you all for making it happen.
Our annual assembly went as it should in regard to the statutes. We got three new members into the executive board. But we also had to say goodbye to Tomáš Moravik who has been a big asset to the ESCIF. We wish Tomáš good luck, we will miss him and hope to see him in the ESCIF in the future!
After a period without a president I was elected as president at the assembly. I am very proud for the election and I will work for all of us in the best manner I can, and I hope I live up to your expectations. Thank you for the election!
Best regards
Stefan Opresnik Jorlev
ESCIF President
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Report of the ESCIF Congress 2019 in Gothenburg
"It was about time that ESCIF Congress took a place in Scandinavia" as Annika Tännström accurately put it during her welcome address, representing Region Västra Götaland and City of Gothenburg, the second largest city in Sweden where the 14th ESCIF Congress took a place from 27 - 29 May 2019.
Indeed it was a memorable event thanks to the outstanding organisation by the whole team of The Swedish Association for Survivors of Polio, Accident and Injury (RTP) and Gothenburg Competence Centre for SCI.
Gunilla Åhren, engaged in both organisations and also ESCIF for many years, briefly introduced us to the congress theme, EMPOWERMENT - KNOWLEDGE IS POWER as the program already continued by the first keynote speaker who elaborated on the topic. It was no-one else but Lisa Harvey, a physiotherapist with a Bachelor of Applied Science (Physiotherapy), Graduate Diploma of Applied Science (Exercise and Sport Science), Masters of Applied Science (Physiotherapy) and PhD.
She is both a clinician and a researcher with over 20 years' experience in the area of spinal cord injuries. She is primarily interested in clinical trials designed to determine the effectiveness of different physiotherapy interventions for people with spinal cord injury.
On Tuesday morning we started with a workshop led by Jacobs Olhsson from Reform Act, organisation facilitating people's engagement, who introduced to the congress participants an effective way to start a campaign or a project.
During this session Anders Westgerd from Gothenburg Independent Living and Theo te Winkel from Dwarslaesie Organisatie Nederland showed us their unique approach to the lobbying and raising public awereness to demostrate different means by which we can achieve our mission.
In the afternoon the working day continued by sincere and seemingly intimate presentation about the issue common to the most SCI people, bowel management. Claes Hultling brought by the congress' golden sponsor Wellspect, has done a great job in making us think about our habits and the way we treat ourselves. Claes is a SCI doctor at The Karolinska Hospital in Stockholm. He is also a professor and the founder of the Spinalis Foundation, a cutting-edge organization that is dedicated to research and development of treatment in SCI.
Wellspect also displayed their bowel management and bladder products with great interest of the participants. As exhibitors Braun Ability showed solutions for cars. Panthera and Permobil had their different wheelchairs and attachments for display. The companies that participated and had an exhibition had a lot of activity in the breaks.
The program continued with the next keynote speaker John Chernesky who is the Consumer Engagement Lead at the Rick Hansen Institute and the Vice-president of the North American Spinal Cord Injury Consortium (NASCIC). With nearly 25 years of lived experience SCI, John has participated in dozens of research studies in addition to being a co-investigator on a number of research projects. He works closely with spinal cord injury consumers (individuals with lived experience including people with SCI, their family and friends, as well as consumer-focused community organizations and advocacy groups) to ensure research is addressing their priorities and will have an impact on their lives.
We finished the working day with the 14th Assembly of Delegates and in particular the elections to the ESCIF Executive board which we report below.
The Delegates' Dinner took a place on Tuesday's evening and the beautiful moments were accompanied by Martin Engqvist, tetraplegic singer and his band The Confidence Man.
The last day was dense in knowledge that the participants could gain from various speakers. The morning was focused on different ways to spread the knowledge. Also the keynote speakers had their part in this session.
The final section of the ESCIF Congress 2019 was series of presentations exceeding the theme of the congress in a positive way.
- Anna-Carin Lagerström presented us publications on healthy living with SCI. You can download some of the books for free at spinalis.se/litteratur
- Julia Anderson and Eric Berndtsson told us about their current peer-based project at RG Aktiv Rehabilitering
- This organisation was also represented by Katarzyna Trok who shared with us a fascinating story about peer-based training program for people with SCI in Botswana.
We concluded the three days of knowledge sharing, creating and deepening relationships and also good food and laughs by invitation to the ESCIF Congress 2020, which will take a place in Nottwil between 6 - 8 May 2020.
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Elections to the Executive board
Since the previous congress in Prague we urged our member organisations to consider and to propose a new candidates to the ESCIF Executive board as it was running short of manpower after the tragic losses we all suffered.
We would like thank to all of you who heard our call, despite not being elected:
- Lucy Robinson - The Spinal Injuries Association, England
- Vincenzo Falabella – FAIP, Italy
Before the election itself, the Executive committee proposed to elect 4 new board members in order to have in total 5 board members and a president. After a discussion, the Assembly of Delegates decided with 50 votes to elect only 3 new board members and so to have 4 board members and the president.
The Assembly of Delegates afterwards elected:
- Bojana Gladović - SPIKS, Serbia
- Mirjam Kanalec - Paraplegics Association of Slovenia, Slovenia
- Milan Kašiak - Paraplegické motivačné centrum, Slovakia
Stefan Opresnik Jorlev was than elected to be the ESCIF President with all votes of the Assembly of Delegates.
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The ESCIF Congress 2020
The next ESCIF Congress will take place between the 6-8 of May 2020 in Nottwil. The topic of the congress will be about the UN Convention on the Rights of Persons with Disabilities. More precisely, the definition of the convention as well as its rules that it entails will be discussed during the congress.
The aim of this congress which will be animated by interesting speeches as well as a workshop is to evaluate on an international level to which extent the ratification of the convention has been implemented within different organizations and countries. Last but not least, the notion of the population's awareness towards disabled people will also play a key role within the congress.
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