2016 marked the final year of our 2012-2016 strategy and it was a busy year for everyone in the MS International Federation. As well as lots of great collaborative work going on behind the scenes to develop our new strategy for the next five years, progress was made in all areas of our work, from research to capacity building and communications to advocacy. Read on to find out about some of the highlights of progress in these areas.
A new strategic plan for 2017-2021
The new strategy for 2017-2021 was approved by the Board of Trustees in September 2016. This was the culmination of an extensive strategic planning exercise involving staff from MS organisations across the global MSIF movement, scientists, clinicians, volunteers and people with and affected by MS. The focus of this strategy is to mobilise the entire MSIF movement; organisations, people affected by MS, volunteers and staff, to achieve our common mission: To bring the world together to improve the quality of life of everybody affected by MS and to end MS forever. If we work together we can achieve this faster and better than if we each work on our own.
In 2016 we played a key role in recruiting people affected by MS to join the Alliance’s Scientific Steering Committee. This Steering Committee then reviewed applications and selected three Collaborative Network Awards to receive €4.2m each over four years to speed up the development of treatment for progressive MS by removing scientific and technology barriers. In addition, together we continued to fund and oversee the 22 innovative research projects funded through a series of Challenge Award grants awarded in 2014.
Between 2012 and 2016 we supported 60 young MS researchers from 26 countries, 80% of whom were from emerging countries. Many are now contributing to MS research and care in their own countries. Recipients of our awards have had 50 papers published in high quality journals and 12 fellows/grantees have been involved in establishing or volunteering for their national MS organisations.
Capacity building and emerging countries
At our 2016 international meetings, topics covered included: medical assisted dying, advocacy campaigns to ensure people with MS get financial support from governments and updates on latest findings in research. At the September meeting we held our third fundraising workshop, which enabled MS organisations to share experience and best practice to improve fundraising performance. There were 43 attendees, representing 23 members.
The goal of Kiss Goodbye to MS is to raise much needed awareness and funds for MS, particularly engaging young women and men who haven’t previously thought of fundraising. It was originally created in Australia and is a fun, positive and empowering campaign that lets people fundraise in the way they want to. MS organisations from eight countries took part in the first year, and raised over US$1m. 2017 is set to be even bigger…
We provided small grants to seven MS organisations in Morocco, Tunisia, Algeria and Libya to organise the first meeting of the Mahgreb MS Union where they signed an agreement to launch the Union. We also awarded a small grant to an MS group in Sudan to enable them to organise their second World MS Day event.
We helped MS Care (Egypt) and ALSEP (Lebanon) to identify training and organisational development needs, produce their first strategic and fundraising plans, and build their volunteers’ capacity in planning, fundraising, communication and psychological support provision. Following their participation in the capacity building programme, both ALSEP and MS Care were able to fulfil MSIF’s membership criteria and were approved as Associate Members in April 2016.
Our collaboration with MENACTRIMS in organising and co-funding a regional workshop linked to MENACTRIMS 2016 in Amman, Jordan in March was a turning point for the Arab region capacity building programme, linking 19 MS organisations with health professionals and a research entity. It also opened up a new model of funding for such programmes that can be replicated in the future.
The event in Shanghai was organised by a lady we had previously supported financially to enable her to attend a training event. The confidence she gained from the training led her to apply for a World MS Day grant. Now she is keen to establish her own Shanghai-based organisation to support people with Neuromyelitis optica (NMO) a similar disease to MS that affects both brain and the spinal cord, common in China. Her case demonstrates how targeted assistance can lead to tangible results.
We also supported the production of 600 printed copies of Listen magazine, targeting the MS/NMO community in China. One of the magazine recipients, Sichuan said:
“Reading the 5th issue of “listen” allows me to see the tenacious struggle of patients living with the disease. They are not depressed, they do not give up hope. Self-acceptance gives power to overcome the disease…. My confidence has been restored and I have the courage to continue… “
In November, we participated in the Latin American Committee for Research and Treatment in MS (LACTRIMS) held in Buenos Aires, Argentina. This included a two-day workshop hosted by ALCEM, our Supporting Organisation in Argentina. The event aimed to build relationships between organisations and promote discussion and exchange of experience on topics including access to treatment and the effective use of social media. Representatives from MS organisations in Argentina, Mexico, Peru, Colombia, Paraguay and Uruguay attended and we were able to meet many of our contacts in the region, face-to-face, for the first time.
Information and communication
The Childhood MS Guide was shared with members in July. It was very well received and has been translated into Arabic, Czech, Danish, Dutch/Flemish, French, Norwegian, Polish, and Spanish.
In May we produced a report containing the results of our global employment survey, with the findings and recommendations translated into Spanish and Arabic and disseminated on World MS Day. Over 12,500 people took part in the survey (up from 8,600 when the survey was first run in 2010). The survey results gave us no surprises. It showed that, whilst the situation is slowly improving for people with MS who want to work, there is still a long way to go and simple adjustments are the best way to help people stay in, or return to, work.
Advocacy and campaigning
In 2016 we provided campaign materials, photographs, a website and individual support for MS organisations and individuals around the world to participate in World MS Day on the theme of ‘Independence’. There were 390 World MS day events in 89 countries. 100% of our members took part in some way. World MS day can lead to results in awareness, fundraising or advocacy. For example, our Russian member organisation held an inclusive ball with lots of dances for all abilities to participate and enjoy the night. In Poland, our member held a month of campaigning culminating in an event in their national parliament. A few weeks later, the Polish government decided to reimburse two more MS treatments. In Pakistan, our corresponding organisation was successful in getting two representatives on a popular TV show – the first time MS has received TV coverage in the country.