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“Mobility is a major issue for me. Without people to take me out, I am pretty much housebound. Leaving the house requires very careful planning, it involves investigating the accessibility of the place I’m going, including the toilet facilities, deciding what to wear, and so on”

Christelle from South Africa, living with progressive MS

Progressive MS Alliance members

Sociedade Portuguesa de Esclerose Múltipla - Portugal
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Portugal
Multiple Sclerosis International Federation
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International
Associação Brasileira de Esclerose Múltipla
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Brazil
Deutsche Multiple Sklerose Gesellschaft
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Germany
France Sclérose en Plaques
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France
Esclerosis Múltiple España
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Spain
MS Australia
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Australia
MS Society (UK)
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United Kingdom
MS Society of Ireland
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Ireland
MS-félag Íslands
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Iceland
Multipel Sklerose Forbundet I Norge
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Norway
MS Canada
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Canada
Nationale Belgische Multiple Sclerosa Liga
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Belgium
Neuroförbundet (SE)
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Sweden
Associazione Italiana Sclerosi Multipla Onlus
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Italy
National Multiple Sclerosis Society (US)
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United States
Neuroliitto (FI)
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Finland
Scleroseforeningen (DK)
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Denmark
Stichting MS Research (NL)
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Netherlands
Chair

Cynthia Zagieboylo

President and CEO, National Multiple Sclerosis Society (USA)

Peer Baneke

CEO, MS International Federation

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1

Lack of understanding of progressive MS

Researchers lack the knowledge to focus and accelerate progress, and clinicians are challenged to identify effective treatments.

2

Lack of models for testing progression

As most diseases develop, there are usually identifiable characteristics that mark the progress of a condition. These biomarkers play a vital role in both diagnosis and development of treatments. Progressive MS has so far eluded all efforts to identify these biomarkers. This is a major barrier to advancing diagnosis, therapy and treatment.

What is the focus of the research?

The first grants will be awarded by August 2014 and we expect that programs funded through the Alliance will operate to 2019. By the end of 2016 the Alliance aims to be reviewing innovations funded through the Challenge Awards and starting to work with the most promising research institutions that will achieve our four objectives. By 2019 we expect agents to be tested in Food and Drug Administration- and European Medicines Agency-approved clinical trials, designed and funded by the Alliance. Ultimately we hope to realize the development of new treatments for progressive MS.

This is focused on treatment – what about prevention, diagnosis, prognosis?

The first grants will be awarded by August 2014 and we expect that programs funded through the Alliance will operate to 2019. By the end of 2016 the Alliance aims to be reviewing innovations funded through the Challenge Awards and starting to work with the most promising research institutions that will achieve our four objectives. By 2019 we expect agents to be tested in Food and Drug Administration- and European Medicines Agency-approved clinical trials, designed and funded by the Alliance. Ultimately we hope to realize the development of new treatments for progressive MS.

What do you hope to achieve and by when?

The first grants will be awarded by August 2014 and we expect that programs funded through the Alliance will operate to 2019. By the end of 2016 the Alliance aims to be reviewing innovations funded through the Challenge Awards and starting to work with the most promising research institutions that will achieve our four objectives. By 2019 we expect agents to be tested in Food and Drug Administration- and European Medicines Agency-approved clinical trials, designed and funded by the Alliance. Ultimately we hope to realize the development of new treatments for progressive MS.

2.3 million

More than 2.3 million people currently live with the disease, of whom more than one million have progressive MS.

65%

Up to 65 per cent of people with relapsing-remitting MS will eventually develop secondary progressive MS

15%

Up to 15 per cent of people with MS are diagnosed with progressive MS from the outset (primary progressive MS).

Kerrie, diagnosed in 2008, sits in a chair in a domestic kitchen.

Alexis and Gemma: together against MS

Alexis and Gemma have been together for 25 years and have a 12-year old son. Alexis has primary progressive MS. In this video, Gemma says she has never seen MS get the better of Alexis. When the Alliance was looking for people with first hand experience of living with progressive MS to join the Scientific Steering Committee she knew Alexis was the perfect person.

Jon Strum joined the Progressive MS Alliance after his wife, Jeanne, was diagnosed with primary progressive MS (PPMS) in 1997

Jonathon Strum: progressive MS takes no prisoners

Jonathan lives in California and cares for his wife, who has secondary progressive MS. Her MS progressed very rapidly after diagnosis and he gave up work for 11 years to care for her. In this film, he explains how MS not only impacts the person with MS, but also the people around them who have to be as supportive as they can be.

Interested in reading the full report?

Download, read and share the progress

Download report

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