Research Network Steering GroupThe group consists of up to six Research Network members.
Meet the team
Sarah has been a member of the Research Network since it began in 2008, and has sat on our steering committee for four years.
I work part time as an HR and Admin Manager for a firm of chartered accountants, but love to spend time reading and playing with my dog. I’m lucky to live in the North East of England and currently have the beach more or less on my doorstep. I love the feeling of space it gives me.
I joined the Research Network when it was first set up, so at one point or another have taken part in most of the activities available. I enjoy being part of something that is intellectual, challenging, engaging, and has the potential to improve the lives of so many people living with MS.
Being part of the steering group has given me a different perspective of the Network. It’s been great to take a step back and marvel at how many people contribute to the progress of research. It’s also given me an opportunity to see all the hard work put into the network by the team at the MS Society, and it’s great to see that start to be rolled out into care and services too.
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.
Janice joined the Research Network steering group in November 2017 and lives in Hertfordshire.
I was diagnosed with a Clinically Isolated Syndrome in 2008 and formally diagnosed with MS in 2010. At the time of diagnosis I was unaware that my second cousin (who lives in the States) also had MS.
Until 2013 I was working as a Chartered Physiotherapist in my own practice. I now enjoy Pilates, gardening, walking (although hill walking is not possible now), travelling and fundraising related activities.
When I became unable to continue my work, I felt as if I still needed to keep my brain active and try to help others. I joined the Research Network in 2014 after moving to the South East of England. I have been involved in many different activities over the last few years, including lay reviewing grant proposals or participating in focus groups.
I particularly enjoy sitting on medical panels as a patient advisor, such as for the Cambridge Board of myelin repair and European Medicines Agency. I’m a bit of a research “Geek” and so following research progress gives me hope for all of us with MS.
Rani joined the steering group in November 2017 and lives in YorkshireRani, Research Network steering group.
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 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.