MSIF 50th Anniversary Board Meetings, London

Members of the global MSIF movement marked its 50th anniversary in style in September, joining together for a very special set of meetings in London.

The meetings, which ran from 13-16 September 2017, featured a jam-packed schedule that included insightful presentations, hands-on workshops, moving discussions about the challenges of life with MS, and even a reception at the Houses of Parliament.

Here are some of the highlights from the meetings.

People with MS Forum

Every two years, people with and affected by MS come together to give direct input into the work of the movement.

This year, the group discussed the Principles to Improve the Quality of Life, emphasising the importance of tackling societal attitudes and mental health support. Several MS organisations, including Denmark and Germany, shared their success of using the tool to structure discussions around the priorities for people with and affected by MS and to inform organisational plans.

The group also explored challenging subjects in an afternoon of moving discussions and presentations, including the scale of the impact of MS on the quality of life of spouses, partners, family members, and unpaid caregivers, focusing attention on the need to find better ways to support them, and a workshop on palliative care.

Access to Effective Treatments

During a one-day workshop on access, a variety of countries shared guidance on ways to influence governments, clinicians and health care companies, treatment costs, the attitude of doctors, the speed of diagnosis, and much more. This productive and informative workshop demonstrated that organisations in any country can make a difference and can learn key skills from each other, for example about the importance of having strong data, telling personal stories, and repurposing materials from other countries.

Wolfensohn and Charcot Awards

The Wolfensohn Award honours a person with MS who has made an outstanding contribution to the MS movement. Kyoko Nakata, from Japan was presented with the award and gave an inspiring speech, focusing on the leadership she had provided to ensure that her organisation provided truly independent information for people affected by MS.

It was announced that the Charcot Award for a lifetime achievement of Research will be awarded to Professor Per Soelberg Sørensen, from Denmark, at ECTRIMS in October. You can watch a short video interview with Prof Sørensen here.

Houses of Parliament: 50th Anniversary Reception

Having started our journey 50 years ago in the UK Parliament, the MSIF movement returned there for our jubilant Anniversary Reception. The reception was hosted by the Member of Parliament, Richard Hoar, Chair of the All Party Parliamentary Group on MS, who passed on a supportive message from Prime Minister Theresa May. “I know from my own family the impact that multiple sclerosis can have”, she explained.

“It is important to try to help people with MS back into the workplace – which we are doing in the Department for Work and Pensions – because many of them want to continue to be in the workplace and to provide for themselves and their families.”

More highlights

Whilst reflecting on the huge achievements of those like Sylvia Lawry, who began the global MSIF movement, members also looked ahead to the future. The meetings featured an insightful panel discussion about progress in MS research over the past 50 years and hopes for the future, updates from the Progressive MS Alliance, new elections to the Board, and an uplifting music video from the Israeli MS Society, entitled “Just the way I am”.