Highlights from MSIF’s 2018 Global Networking Meetings, Amsterdam

The global MSIF movement gathered in Amsterdam in April for a stimulating few days of meetings, visits and building relationships. We were delighted to be joined by 67 delegates from 23 countries.

We had a range of lively discussions on topics such as brain health, the International Progressive MS Alliance, MSIF membership and much more. Here are some of the highlights.

Nieuw Unicum visit, attended by Queen Máxima of the Netherlands

Delegates had the chance to visit the unique and globally leading care institution, Nieuw Unicum, which cares for 140 residents with advanced progressive MS and a further 250 people in their own homes.

We had a tour of the innovative multi-disciplinary facilities and saw the specialist care that people with MS received. Many people on the tour commented on how inspiring the centre was and how it had given them ideas for services in their own country.

We were joined by Queen Máxima of the Netherlands for a series of presentations from staff at Nieuw Unicum. We heard from the former medical director of the centre, a speech therapy specialist who explained developments in diagnosing and treating swallowing problems and an MS nurse who specialises in Nieuw Unicum’s online coaching programme that offers support remotely. We also had a lively panel discussion, where we explored rehabilitation and palliative care, respite services and residential care in a range of contexts including India, the US and Denmark.

World MS Day

The new strategy for World MS Day was presented. We heard the World MS Day working group’s plans to re-align the campaign with the MSIF 2017-2021 strategy and to ensure that national activities are at the heart of the global World MS Day campaign. We discussed the different audiences that different members engage with, which highlighted the diversity in how members run their campaigns. We also discussed the balance between a flexible World MS Day and a single global goal. In line with the working group’s discussions, it was highlighted that World MS Day will continue to have a flexible, ‘pick & mix’ approach, except in cases where we set a clear global objective.

Progress on the movement’s strategy

It has been inspiring to see how members have taken up the challenge of shaping the movement. We had an update on progress made to date on the MSIF strategy and we saw the great breadth of engagement across the working groups.

We heard about recent progress made on the access aim, driven by the two subgroups working on access from a global and Latin American perspective. In particular, we heard about working with the WHO on the Essential Medicines List and improving access to safer Disease Modifying Treatments. There was a fruitful discussion on access in the context of engagement with the pharmaceutical industry, the Sustainable Development Goals and common challenges across borders.

We also had an update on the progress that has been made in building a stronger, broader movement. We heard about the ongoing collaboration in the Arab region with MENACTRIMS and the plans to launch an awareness raising campaign with young people towards the end of 2018. In Latin America we heard about the great progress that has built upon the regional meeting in Mexico in 2017, which was the result of MSIF playing an essential facilitative role in the region’s work. The ongoing work in the region is underpinned by inclusion, a focus on current legislation and good practices between MS organisations and donors.

#BringingUsCloser dinner

Stichting MS Research hosted a fantastic evening, where we were joined by Dutch Olympic speed skater, Michel Mulder. The winner of the very first global MS Research Booster Award – awarded in collaboration between the Stichting MS Research, MoveS, and MSIF – was announced as Dr Benjamin Clarkson, whose leading research has focused on the reaction of nerve cells to the loss of myelin.

During the evening, hosted under the World MS Day theme of bringing us closer, Stichting MS Research launched their brilliant Kiss Goodbye to MS campaign.

There was a buzz of excitement when MSIF’s CEO, Peer Baneke, raced against the Dutch Olympic speed-skating champion Michel Mulder to hand out Stichting’s brand new Kiss Goodbye to MS lab coats to the MS researchers amongst the audience!  It was an immense pleasure to celebrate this wonderful evening with Stichting Research. MSIF would like to extend its warm thanks and gratitude to them for hosting and putting on a brilliant few days for us all.