The year 2023 marked significant milestones in the global MSIF movement. Let’s explore some of the highlights that defined MSIF’s work this year.
Together with everybody in our member organisations, and all those connected to us, we form a global MS movement. In 2023, we shared our new common strategy to bring the world together with urgency, to improve the quality of life and wellbeing of everybody affected by MS, and to end MS forever. Our strategy for 2023-2027 is centred around three powerful aims, reflecting the impact we strive to create together as a movement. The introduction of this strategy represents an important moment to look to the future and envision a world without MS.
2023 saw the initial outcomes of the first Train the Trainer – MS Expert Patient Academy in Central America, developed in collaboration with the Universidad del Paciente y la Familia (UPF), in 2022. In January and February this year MS organisation leaders and health professionals from Costa Rica, the Dominican Republic and Honduras held 6-week long expert patient academies with their national MS communities – applying the skills they learnt from the October 2022 Train the Trainer Workshop held in Panama.
As a result of the project, academy participants with and affected by MS took a more active role in their MS management and volunteer numbers increased in all countries. The Asociación Costarricense de Esclerosis Múltiple reported increased collaboration with health professionals in programme development. The Fundación Dominicana de Esclerosis Múltiple, described greater cohesion and reactivation of the MS community. And, in Honduras, two people affected by MS joined the board of the Asociación Hondureña de Esclerosis Múltiple.
We also reflected on MSIF’s multi-year project with the MS Society of India (MSSI) as phase one came to an end. During this phase, MSIF aimed to build skills and knowledge and improve communication, coordination and learning exchange amongst MSSI’s staff and volunteers, through the implementation of their national advocacy project which focused on the Rights of People with Disability Act 2016. An annual grant from MSIF, alongside coaching and mentoring from the MSIF team, contributed to the development of effective awareness-raising campaigns which highlighted the absence of a comprehensive national MS registry, investment in an active National Youth Wing and increased partnership working with disability networks and NGOs throughout India.
In February 2023, such partnerships resulted in the MSSI submitting a joint application to the Director General of Health Services within the Government of India Ministry of Health, for the revision of the national disability assessment guidelines – used to decide if a person can access the benefits the Rights of People with Disability Act provides.
In April 2023, MSIF’s past fundraising guidance and support contributed to the MSSI being awarded a grant of INR 12.5 million (approximately 121,000 GBP) for a 3-year period by the Azim Premji Foundation. This was an important achievement for the MSSI as diversifying their fundraising portfolio will help sustain their advocacy, and other work.
The successful conclusion of the World MS Day #MSConnections campaign in 2023 was an important milestone in our efforts to broaden the reach of the global MS movement. With increased participation from numerous countries, the campaign contributed to amplifying the collective voice and impact of the global MS community. There were vibrant celebrations for World MS Day 2023 in 127 countries, including ten countries, or territories where World MS Day activity took place for the first time, or the first time in a number of years: Armenia, Democratic Republic of the Congo, Guadeloupe, Kazakhstan, Tanzania, Uganda, Rwanda, Senegal, Togo, Martinique.
The end of this campaign also marked the beginning of an exciting new phase for World MS Day. At the end of 2023 we announced the new theme for World MS Day 2024-2025, ‘My MS Diagnosis’. The campaign will advocate for early and accurate diagnosis for everyone living with MS. We will highlight global barriers to diagnosing MS, raising awareness by sharing real stories and data. We will campaign for better MS training for health care professionals, new research, and clinical advancements in MS diagnosis. Together we will work to build informed, caring communities and systems that support people diagnosed with MS.
In May, The May 50K challenge saw substantial participation from an amazing 11,300 individuals across 63 countries, reflecting the inclusivity and accessibility of the challenge. The event’s emphasis on participation from diverse locations and varied approaches underscored the collective spirit and resilience of the participants.
June witnessed 20 dedicated cyclists forming the Cykelnerven 2023 International team, joining forces with 250 Danish riders from Scleroseforeningen to brave some of the daunting challenges of the Tour De France. Their tenacious efforts exemplified the spirit of perseverance, as they overcame the toughest mountains of the Tour, just weeks before the professional event.
In July, a significant development took place in the global MS landscape, as the World Health Organization (WHO) added three MS therapies into their Essential Medicines List (EML), following our application earlier this year. With this pivotal decision, the WHO acknowledged the critical importance of making MS treatments available in all health systems at all times. It was a significant moment in the history of MS, marking a crucial step towards improving access to MS treatments for people living with MS, particularly those in low- and middle-income countries or low-resource settings.
Participants from MS organisations in all world regions attended MSIF’s global webinar, ‘WHO Essential Medicines List – a landmark decision to add MS medicines’ in September. Through the webinar they learnt about MSIF’s tools and resources to support national advocacy to improve access to treatment and how MS organisations and health professionals in Canada, New Zealand and Malaysia were working in this area.
Leveraging the knowledge from many of our members and the global research community, MSIF continued its efforts to empower the global MS community with clear and trustworthy information on key research topics. In 2023, we focused on providing comprehensive information about the impact of Smoking and MS, as well as the current state of research into the Epstein-Barr virus and MS. This information has been translated by MS organisations across the globe – a testament to the importance of these global research statements.
Furthermore, we worked in collaboration with MS organisations to bridge the information gap on Ageing and MS. Thanks to the dedicated translation efforts of MS organisations around the world, our comprehensive guide, ‘Living well with MS as you grow older,’ was made accessible in nine languages. The guide offers practical guidance and support for individuals navigating the complexities of MS in the context of growing older. The booklet is now available in English, Spanish, Arabic, Romanian, Portuguese, Farsi, French, Czech, and Dutch, and has helped to inform MS organisations and people affected by MS in many parts of the world.
The year also marked the welcome addition of the Национално здружение за МС (National Association for MS) from the Republic of North Macedonia as MSIF’s newest Associate member, reflecting our continued commitment to growing a robust and inclusive global MSIF membership.
Updated data from the Atlas of MS offered valuable insights into the global epidemiology of MS, revealing that there are now more than 2.8 million people living with MS worldwide, with prevalence increasing in many countries. New data on the varying use of disease-modifying therapies (DMTs) across the world was also made available through the Atlas of MS website.
In September, we hosted our annual global networking meetings in London, UK. Over four days, we heard updates from the global MSIF movement, discussed important strategic planning, looked ahead to World MS Day 2024 and much more. It was fantastic to hear more about the activities of MS organisations across the globe, and to share ideas and learnings across the movement.
In November 2023, MSIF, with our partners ECTRIMS and ARSEP, proudly announced the recipients of our McDonald Fellowships and Du Pré Grants. This year’s awards will support researchers from Argentina, Brazil, Ghana, and Mongolia. The awards enable researchers and clinicians from low- and middle-income countries to collaborate with established MS research institutions abroad, helping them build skills by working with global experts. MSIF’s awards aim to foster a strong global MS research community and help to eventually address local MS challenges.
The MENA Region Access to Treatment Charter project used the collective voice of the Middle East and North Africa (MENA) region to draw decision-makers’ attention to the right of people with MS to safe and effective treatment. A result of an MSIF workshop, held in Egypt in November 2022 during the annual Middle East North Africa Committee for Research and Treatment in Multiple Sclerosis (MENACTRIMS) Congress, with MS organisation representatives from across the region. This collaborative project involved 13 MS organisations from Algeria, Egypt, Iraq, Kuwait, Morocco, Saudi Arabia, Syria, Tunisia and Yemen and was endorsed by MENACTRIMS. Launched in December at the MENACTRIMS 2023 Congress, in the UAE, the regional principles within the Charter around access to treatment can be used to support future national and regional advocacy work.
This is just some of the progress made in 2023, the highlights in this article reflect the dedication and collaborative efforts of the global MS community. None of these achievements would have been possible without commitment from everybody in our member organisations, and all those connected to us. This year we have worked towards improved awareness of MS, better access to healthcare and information to support people affected by MS, and a stronger, broader, global MS movement.
With a commitment to continued collaboration and global action, the MSIF movement will bring the world together with urgency, to improve the quality of life and wellbeing of everybody affected by MS, and to end MS forever.