Frontiers and more
It’s been a busy period at ADAMS HQ.
We had the privilege of talking about the study at the MS Society’s ‘MS Frontiers’ conference in Swansea. For me MS Frontiers is a really special conference because it has both cutting-edge science and personal perspectives from people affected by MS. Research can often feel painfully slow and dishearteningly difficult. It is inspirational to see how much research matters to people affected by the condition. This is the most powerful motivation for trying to make sure we produce high-quality science which leads to benefit in the long-term.
It was great to meet so many people involved in the study in-person for the first time. Our study team featured heavily in the programme - I spoke about the overall progress and design of the study. Roxy Murray, a disability advocate and member of the ADAMS steering group, chaired a great session on making MS research more representative. Michelle Lowe, a social scientist who works on barriers to inclusivity in exome sequencing and another member of the steering group, spoke about her experiences of being a black woman with MS. Ruth Dobson, chief investigator on the study, organised the whole thing and spoke about how we are hopefully inching close to predicting and preventing MS in the coming decades.
We also met lots of co-investigators who are leading / are about to start leading the way with recruitment at sites across the UK. As I said in my talk - we are trying to be ambitious with this study, and the only way we can hit our recruitment targets is through teamwork and collaboration:
For now our main focus is on recruitment and starting to process the first batch of genetic data. In terms of hard numbers, we’ve recruited ~380 people now and are processing DNA samples from the first ~250:
This is great, and we’ve still got a way to go: anything you can do to spread the word is a great help. Anyone with MS living in the UK from non-White British ethnic backgrounds is welcome to sign up using this link.
If you’d like to stay tuned in to our progress, remember to subscribe to this newsletter. You can also take a look at our recent blog on the MS Trust website (co-authored with Michelle), follow us on twitter and look at the website itself. We’ve also got some events coming up
Chat with the East London MS Society group - 20th July, email Samsam for details
Online session hosted by the MS Society - 28th July, sign up here
Stay cool
Ben