Many of you will have seen the previous post on Preventive Neurology and the new initiative we are setting up to work towards preventing MS. As many of the comments have identified, this is a difficult area to study. We have to find a way to start monitoring people before they develop the earliest signs of MS.
If you haven’t seen it, read the previous blog post on Preventive Neurology.
Family members of people with MS have an increased risk of developing MS compared to the general population. So any preventive study would involve looking at family members, including the children of people with MS.
One of the first steps in our prevention study will be to follow family members in order to see who goes on to develop MS, and who doesn’t. This is likely to be something that is done online, rather than in person. We want to then be able to go back and look at the differences between those that do and don’t develop MS in the years prior to the first symptoms becoming apparent.
People with MS are central to this study - without you we cannot make this work. We need you to be enthusiastic about the study, and willing involve your family.
This is where we need your help. We need people with MS to help us to design this study. To do this, we are running an event for people with MS and their families, to come along and give us their thoughts and advice.
The event will run in the summer holidays, on Friday August 10th, in London. It will kick off with a Digesting Science event. If you haven’t been to one of these or heard of them, Digesting Science is a fun set of games and activities to teach children (aged 6-12) about the science behind MS. It was developed by the Barts-MS team, as well as teachers and parents with MS. You can come along to this event, where your kids will have lots of fun trying all the activities. You can find out more about Digesting Science on the Digesting Science Facebook page.
After the event, we’ll be holding discussion groups to talk to you and your children about how you feel about a prevention study. We want to hear your ideas, and are particularly interested in any worries and/or concerns you may have about you, your children, and other family members taking part in a long-term study. We want to know what you think about this kind of study so that we can structure the study around what is important to you, and try to address concerns before the study starts.
This will only work if we have a good number of families involved and engaged.
Please come along to the event to find out more about the study to prevent MS. Email us to find out more and let us know if you are interested in attending. Coming along does not mean you are committed to taking part in the study. And if you can’t come, but you want to tell us your ideas or find out more, please contact us: preventMS@gmail.com.
And please tell any other families affected by MS; you could also share this post or tell your MS nurse or any part of your healthcare team, to spread the word.