Thank you for taking part in The May 50K
There are over 2.8 million people around the world living with MS and in every country, life is different. It’s our mission to leave MS where it belongs, behind us.
Together you have raised more funds for global research, targeting prevention, better treatments and a cure for MS and help every person in every country get access to the treatments they deserve. Both worldwide, and at closer to home. You can find out more here!
Please take a moment to read about how your fundraising is changing the world.
The Progessive MS Alliance
The International Progressive MS Alliance have come together to remove the barriers to new treatments. One of the major barriers is that we do not have accessible, accurate measurements of how someone’s disease is progressing, which for someone with progressive MS is a major problem. If you can’t measure progression you can’t measure how effective the treatment might be. If you can’t prove it is effective regulators can’t approve it.
But now the regulator in the USA, the FDA, has issued a first of its kind letter to the International Progressive MS Alliance to support its development of a blood test that could remove this barrier. If the research continues as planned we could have a real breakthrough on our hands. Funded by people like you and delivered by one of the biggest international collaborations in MS history.
When the COVID-19 pandemic started in 2020, with funds from you MSIF worked with the MS Data Alliance to rapidly bring together data initiatives from countries around the world, in order to answer key questions about the risk of COVID-19 infection for people with MS. You have funded collection of data from over 10,000 people with MS from 80 countries.
The global dataset has enabled us to confidently investigate the impact of disease modifying therapies on the severity of COVID-19 – something that would not have been possible without working together internationally. We have continued the partnership through 2021, to investigate the effects of a greater range of DMT types on severity of COVID-19 outcomes. We know there are also outstanding questions about the COVID-19 vaccines for people with MS – and through bringing global data initiatives together, MSIF could support them to share data and answer these important questions.
MENA Access to Treatment
You are supporting training for people living with MS in countries throughout the Middle East and North Africa to campaign effectively for access to treatment. Giving hope to thousands of people living with MS.
Following a suggestion from the leadership of MS organisations in Morocco, Egypt, Iraq, Lebanon and Saudi Arabia, MSIF helped facilitate an online discussion in December 2020. Participants shared their experiences of participating in MSIF’s capacity building work and discussed what future path the work could take in the region, with more focus on promoting regional cooperation and improving access to treatment.
In April 2021, we organised the first virtual workshop consultation to discuss the proposed model of a MENA regional capacity building programme for access. 25 participants representing 13 organisations/support groups attended and participants were very engaged and contributed to the development of the proposed capacity building for access new model in MENA. We will be carrying out wider consultation across the region, organise workshops and identify common barriers to access to treatment in the region to take this new exciting regional work forward.
Review of existing Medicines
You are funding the creation of a new system for review of treatments used in other conditions that can be used safely and effectively for MS, so people with no access to approved treatment will finally have options they can trust.
There is a lack of clinical trials that compare all the different MS medications with each other. One way to compare the different safety and efficacy profiles on the disease-modifying therapies is to review all existing evidence systematically and to use a ‘network meta-analysis’ to compare them.We hope to use this evidence review to support an application to add MS treatments on the World Health Organisation essential medicine list. It’s a list of treatments that help prioritise which treatments should be available as a minimum in all health systems.
The Global Patient Reported Outcomes in MS (PROMS) initiative aims to develop a global, unified view on PROs to enhance their use and impact in MS research and healthcare, your funds supported this initiation. During 2020, we brought together people from across the globe with experience in research, clinical care, health economics, digital health, together with people affected by MS. Four working groups were established.
The first phase of the PROMS initiative is due to run until the end of 2022. In this first phase, the activities – such as literature reviews and surveys - aim to understand what is currently known about patient reported outcomes for MS, and where the gaps are. A second phase may then be initiated which aims to address these gaps through activity such as research, guidelines for clinicians, development of new digital tools, or policy changes.
Advocacy needs evidence, and you are funding the Atlas of MS, which is the global data initiative to map the gaps and challenges for people living with MS around the world. In September 2020 we launched the first part of the 3rd edition of the Atlas of MS, which focused on the epidemiology of MS (the numbers of people with MS and how this varies across the world). The key findings are that MS prevalence has increased in all world regions since 2013 and that there are now an estimated 2.8 million people living with MS worldwide.
The second part of the Atlas was published in April 2021 and highlights that there are many barriers and inequalities that exist in getting a diagnosis, accessing disease modifying therapies (DMTs) or receiving symptomatic treatments and rehabilitation. This is important to address as an early diagnosis is vital to enable early treatment with DMTs, that can minimise relapses and reduce future disability. The Atlas of MS can be used for change and provided examples from the movement about how the data has or will be used to engage decision makers, educate the public, change policy, and for fundraising and campaigning.
Celebrate your impact
We have created new posters so you can share them with your supporters and together you can celebrate the difference you are making around the world.
Please also look out for social media posts on our page, or in your Facebook Group.
Essential Medicine List
Use this Poster to show the impact your funds raised in The May 50k make.View