Live music and displays of artwork by people with multiple sclerosis (MS) highlighted the importance of upper limb function at the #ThinkHand awareness event on 22 February.

Over 100 people, including representatives from advocacy groups, industry and MS clinics, joined together in the Bankside Gallery in London to celebrate hand and upper limb function in people with MS.

The guest of honour, Michelle Mitchell, Chief Executive Officer of MS Society UK, emphasized the value of hand and upper limb function in maintaining independence – a top priority for people with MS.

Professor Gavin Giovannoni and Dr Klaus Schmierer, from Barts and The London School of Medicine and Dentistry, highlighted that people with advanced MS who have lost the ability to walk but retain their upper limb function are currently overlooked when it comes to treatment.

The #ThinkHand campaign objectives include:

• challenge the NHS England guidelines for stopping DMTs when people with MS develop secondary progressive MS and/or start using a wheelchair
• get the pharmaceutical industry to do trials in more advanced MS focusing on hand and arm function as the primary outcome

Ultimately, this could lead to more treatment options for people with advanced MS. You can find out more about the #ThinkHand campaign on the Barts MS Research Blog and on Twitter at #ThinkHand.

“Treat MS properly at the start and we may be able to delay or prevent the secondary progressive phase.” 

The outlook for people with multiple sclerosis (MS) looks likely to improve. That was the message from Professor Gavin Giovannoni as he addressed over 400 delegates at the MS Trust Conference in Windsor, UK. In his talk, ‘Looking to the future’, Professor Giovannoni summarized clinical trial results for products at different stages of development and presented the therapeutic strategy outlined in Brain health: time matters in multiple sclerosis. 

Highlighting the importance of early diagnosis and treatment initiation, Professor Giovannoni proposed a future where we “stop people with MS becoming disabled in the first place”. He told fellow healthcare professionals: “treat MS properly at the start and we may be able to delay or prevent the secondary progressive phase”. Professor Giovannoni also emphasized the need for a clear treatment goal, regular monitoring of patients using MRI and timely switching of therapies when disease control is suboptimal to preserve brain health.

Delegates included MS specialist nurses, physiotherapists and researchers, and every delegate received a four-page summary of the policy recommendations. Professor Giovannoni urged the audience, and anyone who wants to improve the lives of people with MS, to pledge their support to protect brain health at www.msbrainhealth.org/pledge.

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A new campaign, aimed at creating a better future for people with multiple sclerosis and their families, was launched on 6 October. 

The MS Brain Health campaign is a call to action based on recommendations from a new multidisciplinary consensus report. Brain health: time matters in multiple sclerosis was unveiled at an international symposium on the eve of ECTRIMS, the largest specialist MS conference in the world.

Healthcare professionals and representatives from advocacy groups were among the symposium audience that heard lead author Professor Gavin Giovannoni and colleagues call for the adoption of a therapeutic strategy in MS that aims to maximize lifelong brain health.  

“It’s our responsibility to make sure that someone living with multiple sclerosis gets to old age with a healthy brain, so they can withstand the ravages of ageing,” said Professor Giovannoni. “The treatment philosophy is as simple as that.”

The strategy includes early intervention, a clear treatment target, regular monitoring and improved access to disease-modifying therapies (DMTs).

The report has been welcomed by professional associations and advocacy groups, including the European Brain Council (EBC), the European Multiple Sclerosis Platform (EMSP) and the Multiple Sclerosis Society.

The campaign is urging people to pledge their commitment to spread awareness of multiple sclerosis – and the potential to help people with the disease through embracing the recommendations of the report.

The goal of treating multiple sclerosis (MS) should be to preserve tissue in the central nervous system and maximize lifelong brain health by reducing disease activity.

This is the principal theme of a new report from an international multidisciplinary author group. Brain health: time matters in multiple sclerosis will be launched at an interactive symposium meeting today, on the eve of the ECTRIMS congress.

The report calls for a sea change in the management of the disease. Examples from other areas of medicine show that positive outcomes can be achieved when treating to a specifi­c target. The authors recommend a therapeutic strategy based on regular monitoring to support a treatment target that maximizes lifelong brain health, while fully involving people with MS in shared decision-making.

The symposium will discuss the evidence base for such an approach in MS, and the potential impact on health and economic outcomes.

Heart failure destroys and damages life – coordinated efforts are needed to make the disease a health priority in every country. This was the take-home message of a special meeting convened at the Heart Failure Association (HFA) summit in Rome on 25 October 2014 as part of the Global Heart Failure Awareness Programme. Ambassadors from heart failure societies and working groups in 12 European nations rallied around core messages from the recent White Paper, Heart failure: preventing disease and death worldwide, to prioritize follow-up actions in their home countries. “We are building a much bigger common approach all over the world,” explained Professor Petar Seferovic of the HFA as he opened the meeting, which had been organized by Oxford Health Policy Forum (OHPF). “We aim to deliver the core messages to heart failure experts ... media representatives and policy makers.”

“Ten core messages demand action – and five areas need policy change,” emphasized Graham Shelton of OHPF, as he summarized the findings of the White Paper. “We need to seize publicity opportunities throughout 2015 and beyond, and target local, regional and national stakeholders.” To make the most of such opportunities, a practical guide to working with journalists was provided by Lloyd Bracey of ArcMedia International in a highly interactive session. “One should aim not at being possible to understand, but at being impossible to misunderstand,” he summarized, citing Quintilian.

The next topic, effective local policy intervention in Europe, stimulated enthusiastic discussions on engaging with the European Commission and national policy makers, which were ably facilitated by Caroline Vrancken and Claudia Louati of Burson-Marsteller. During the final session of the meeting, Heather Lang of OHPF urged ambassadors to “get these life-giving messages out to the people who need to hear them,” as they identified country-level priorities and actions for the coming months and years. These local activities will be supported by a toolbox of resources customized for each country, explained Ruth Bentley of OHPF, rounding off the day. “We truly hope that together we can make a difference to heart failure across the globe.”

The Global Heart Failure Awareness Programme is supported by educational grants from Novartis Pharma AG and SERVIER.