I joined the Research Network in 2008 shortly after leaving my job in research. I had just had a big relapse and couldn’t work in the lab anymore. The Research Network gave me another chance to use my skills.
I’m now part of the panel that oversees the Tissue Bank. We meet once a year to discuss the Tissue Bank’s work. We want to make sure it’s meeting the needs of the scientific community and fulfilling the wishes of the donors and their families.
The panel is made up of Tissue Bank experts, neurologists, people with MS and MS Society staff.
Not all about the science
This year was my first meeting, and if I’m honest I wasn’t sure what to expect. I didn’t know what I would be able to add to the discussion.
I was pleasantly surprised. The meeting was really interesting and not all highbrow science. As someone with MS, I had just as much to offer to the meeting as anyone else around the table.
I think it’s so important to have people with MS involved, because sometimes the science can take over. It’s important for researchers to focus on the people, not just the statistics.
One issue we talked about was how to raise more awareness for the Tissue Bank. The Bank does so much good work, but with challenging times ahead we need to do more to promote it.
We’re the experts
What struck me most about the day was how welcoming everyone was. I would encourage anyone who is thinking about a role to do it and not to be put off by the science. As people living with MS, we are the experts!
The day was a fascinating look at how important the Tissue Bank is in the fight against MS and Parkinson’s. And I was proud to be able to help in some small way.
Lyndsey lives in Surrey and has relapsing MS. She loves salsa dancing and is involved in her local MS support group, who meet regularly for coffee and a chat.