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Research Network steering group

Research Network Steering Group

Our steering group monitors and supports the operations of the Research Network, and gives advice on its strategic direction and development.

The group consists of up to six Research Network members.

Meet the team

Joanne

Joanne lives in Surrey and has been a member of the Research Network since 2015.

My MS started suddenly in 2012 and has been very active so I rely on a variety of mobility aids. Fortunately I have a great MS team at St George's Hospital.

I work part time as market researcher now, mainly from home, with support from Access to Work. I've got lots of hobbies - my husband and I like meeting up with friends for a movie or a meal. We have one teenage daughter and we like to go to music events etc, together. I try to go to aqua aerobics classes regularly and have become a trustee of the MS therapy centre, so I'm lucky to be able to attend weekly physio classes.

Since I joined the network I've been involved in MS Society workshops, a telephone group discussion and reviewed some materials by email. Then I saw a vacancy for the steering group and thought my professional skills might be useful. I've been so impressed by how professional the MS Society team are, and how nice people with MS all seem to be! It has been very interesting and it feels good to be able to help.

Rani

Rani joined the steering group in November 2017 and lives in Yorkshire.

I was diagnosed with MS in February 2001 following a bout of optic neuritis. I was the first South Asian in my local authority area to have been diagnosed with MS. At what could have been an extremely scary and stressful time, my family took it upon themselves to learn more about MS and are generally just a pretty great support network.

I have worked and volunteered in the charitable sector for over 30 years. I am currently Chair of Asian MS (National Support Group), a support volunteer and I also sit on the European Medicines agency as a patient representative.

I have been involved in a wide range of things with the Research Network, from supporting a researcher to develop their patient involvement strategy at pre-application stage to attending a research network conference with clinicians and researchers. These activities were very different but both required ordinary people with MS to give an honest perspective.

The range of things that the network covers is vast, you may not get excited by some opportunities that come along but that’s ok, something good will come along soon. I have found that sometimes just knowing what is happening in the world of MS research is good to know.

Paul

Paul lives in West Yorkshire on the edge of the Yorkshire Dales. He joined the Steering Group in November 2017.

I was diagnosed with primary progressive in 2003 and it was a complete shock.

I was a self-employed dentist but had to stop work about 3 years ago and now I’m in an electric wheelchair full time. I live on the edge of the beautiful Yorkshire Dales, which allows me to practice my hobby of film photography; shooting and developing black and white film. I also enjoy watercolour painting which is tricky as I have to use my less than dextrous left hand and I’m right handed, but my style has evolved and some have worked well.

I joined the Research Network as I wanted to use the more scientific, analytical side of my brain from my professional training and I’ve really enjoyed it. I like reviewing the information for grant and research applications and it’s always a pleasure to meet the dedicated and skilled researchers and clinicians.

I think it’s very important that the MS Society spends due care and attention in the way it spends its funds. The Research Network allows me, as a lay member, to offer my opinion and support to the process.

Sarah

Sarah has been a member of the Research Network since 2018 and joined our Steering Group in 2019.

I'm 46 years old and was diagnosed with relapsing MS in May 2010. I live in Northampton with my very supportive husband, my two energetic boys and our dog, Jingles!  

I’m currently studying for a degree in Health Science. This has been very challenging at times but also rewarding. When I’m not studying I like to hang out with my family.

Since joining the Research Network, I’ve worked with a researcher to develop a study looking into how fatigue affects MS. This was a great chance to be part of current research.

I’ve been on the steering group for around five months. I feel like I’m helping to make a difference for people with MS. Being part of the steering group is like being with friends who understand what MS is and are trying to help others with the condition. This experience make me feel proactive.

Ronnie

Ronnie was born in Glasgow and now lives in the Central Belt of Scotland. He joined our Research Network in 2015.

After being diagnosed with MS in 2015, I got in touch with my local MS Group to find out more about what was happening in my local area. This encouraged me to be more proactive in helping to find a cure for MS, and so I joined the Research Network a few months later.

I’m a bit of a techno geek and have worked for three decades in a variety of IT related roles. I joined the Research Network because I wanted to use the expertise that I’d developed in my professional career. I thought that these skills could benefit and help to guide the Research Network.

I’ve been involved in a wide variety of activities with the Research Network. This includes reviewing research proposals, sitting on a funding panel for a project looking at how data and technology can improve health in MS, and contributing to impact workshops. I’ve really enjoyed listening and contributing alongside a diverse group of individuals who all share the aim of getting the best outcomes for people affected by MS.

David

David lived for a number of years in Los Angeles before moving back to the UK. He joined our Research Network Steering Group in 2018.

I live in Windermere in The Lake District. Prior to this, I lived with my family in Los Angeles where I worked as a Research Scientist in the Space/ Aerospace industry. I was involved in numerous MS programmes in LA and set up and ran a highly successful Men's MS group.

I was diagnosed with relapsing MS in 2008 and progressed to secondary progressive MS in 2013. I retired in 2013 due to disability and moved back to the UK. I wanted to keep engaged with the MS community and research, so I joined the Research Network in 2017. I’ve been involved in a wide range of projects; from participating in the Chartered Society of Physiotherapist work on the James Lind Alliance Priority Setting Partnership, to reviewing research proposals, mobile phone app testing, and advocating for people with MS.

Although these activities are all quite different, they all need an ordinary person with MS to give their honest opinion/perspective/input.

Volunteering for the MS Society and being part of the Research Network is something I really enjoy and find very rewarding. It provides me with a sense of community and it gives me an intellectual outlet. It’s also good to know that my efforts, like many other volunteers, does improve the lives of so many people living with MS.

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