MS Brain Health Awards – winning entries
We hope that many of you were able to join us online to celebrate the recent MS Brain Health Awards ceremony. If so, you will surely have been encouraged and inspired to hear first hand how so many teams, organizations and individuals globally have been putting into practice the MS Brain Health recommendations.
Five categories of awards acknowledged and showcased excellence: Patient Organization; Patient Advocacy; the Team Award; the Individual Award; and the Innovation Award. It is with great pleasure that we provide below a summary of the winning entries.
Patient Organization Award
Rohan Greenland, Chief Executive Officer, outlined how MS Australia has integrated the concept of brain health into all its activities. Early on the organization set up a local MS Brain Health group to promote the adoption of MS Brain Health recommendations in Australia and to target barriers to their implementation. In the 5 years since MS Australia endorsed the MS Brain Health report, the team has delivered a multitude of projects, including:
- Providing a suite of health and wellbeing resources on their website
- Supporting initiatives to address smoking and promote brain healthy behaviours such as exercise and healthy diet
- Promoting the provision of MRI scanning for monitoring and prediction
- Facilitating access to subsidized treatments and increased choice of disease-modifying therapies for people with MS
- Creating road maps to support important MS-related public health and policy campaigns within Australia.
Patient Advocate Award
Nele Handwerker, Germany
In 2020, Nele Handwerker established MS-Perspektive – a German podcast series that she now publishes weekly to encourage and equip people with MS and their families to live a brain healthy life. The core content of the podcast is rooted in the recommendations of the MS Brain Health report and is focused on scientific, evidence-based guidance.
The podcast – which has input from scientific experts – is widely used in Germany, with more than 140 episodes now available! Interviews with MS experts and people with MS address many topics, including lifestyle, positive mindset and the latest MS research. Nele also shares her own experiences of living with MS.
The team at Torbay Hospital in the UK set-up monthly ‘Healthy living with MS’ clinics in 2019, as part of the national health service offering for people newly diagnosed with MS. Dr Agne Straukiene described how the clinic aims to empower attendees to take positive action to preserve their brain health as well as providing opportunities for them to meet and share experiences. They encourage other clinics to follow this model and inspire people with MS to protect their brain health.
This is a great example of an MS clinic that is actively implementing some of the key MS Brain Health policy recommendations:
- Ensure that MS healthcare professionals can take the time to educate people with MS about strategies to manage their disease
- Implement a shared decision-making process that embodies dialogue between people with MS and healthcare professionals.
Jodi Haartsen, Australia
Jodi Haartsen has been an enthusiastic and active promoter of MS Brain Health from its inception; beyond that, she has dedicated her entire career to helping people living with MS have the best possible outcomes. During her 20 years at Eastern Health MS service in Australia, as nurse educator, research nurse and nurse practitioner, she helped thousands of patients. Now working as Executive Manager for Client Engagement and Wellbeing at Multiple Sclerosis Limited, Australia, Jodi uses her vast knowledge and experience to improve MS services through a focus on brain health.
Jodi lists some of the drivers that have contributed to a landscape of inequity, meaning that good outcomes in MS are available to some but not all:
- Social determinants of health (see our recent evidence summary on this topic)
- Variable healthcare systems
- Lack of global governance and policy
- No agreed international standards.
The MS Brain Health report created a platform to address these issues and promote change, with its ambitious recommendations and consensus standards. Among Jodi’s valuable contributions are her involvement in developing the MS Brain Health Nursing resource, raising awareness of MS among general practitioners (see our Guide for general practitioners) and, more recently, trialling the MS Brain Health quality improvement tool and introducing local changes based on the findings.
MS in the 21st Century, Lumanity on behalf of Merck KGaA
'MS in the 21st Century' is sponsored by Merck KGaA and aims to tackle unmet needs in MS. Working together in partnership, people with MS and health professionals encourage the MS Brain Health recommendation of shared decision-making to empower people with MS to participate in their own care.
After gathering evidence around the need for improved communication, the MS in the 21st Centre team developed four communication tools for people with MS and their care teams. Supported by a learning programme, the 'myMS toolkit' is used globally and integrated into practice, patient association and community programmes.
After the award presentations, Paralympian gold-medallist winner Kadeena Cox OBE was in conversation with host Alastair Greener and answered questions submitted online by attendees prior to the event.
Kadeena talked about dealing with fatigue, how she conserves energy when training and the importance of staying mentally, as well as physically strong as an athlete. She highlighted the importance of support from coaches and her team, and stressed the need for more resources for families and carers of those with MS around the time of diagnosis.
To register an interest in entering next year’s awards, please email email@example.com for more information.
Gavin Giovannoni, MD
Professor of Neurology and Chair of the MS Brain Health Steering Committee
On behalf of the MS Brain Health Steering Committee: Gavin Giovannoni, Peer Baneke, Helmut Butzkueven, Tyler Campbell, Jelena Drulovic, Jodi Haartsen, Jeremy Hobart, Stanca Potra, Mitzi Williams and Tjalf Ziemssen