18 October 2025
Meeting report by Penny Cohen and June Masding
The Birmingham meeting was held on Saturday 18th October. It was arranged to be just a chatty get-together but we had a call from Doctor Jacob Day – who is a neurology doctor currently half way through a PHD at Exeter university, researching HSP with Andrew Crosby and his team. He was interested to talk with the group about their experiences of HSP, their diagnostic journeys and priorities for future research.
31 people were expected and we had a turnout of 26, on the day. 6 new members were expected. 4 came, as well as two children, who behaved brilliantly throughout Jacob’s talk. Everyone was welcomed and they then enjoyed the usual buffet lunch, prepared by the Kenricks’ catering team.
Jacob had prepared a presentation for us, aiming to explain about the research they are doing and determining how best things can develop with diagnosis, treatment, prediction and biomarkers. Of the 90 genes associated with HSP, 16 of these were found by researchers at Exeter. There are still up to 50% of people who don’t have a genetic cause found, which means that there are still more HSP genes to find. This is something that they are trying to focus on. The research will be ongoing and hopefully linking up with research in other countries too. Some research in Germany has been looking at the influence of Cholesterol with specific genes.
The presentation lasted approximately 20 minutes, leaving lots of time for questions. After this, Jacob stayed with us for further individual questions and discussion. He offered us a link to give feedback after, about how we thought his talk went and what we might individually hope to see more research being channeled in to.
The next meeting date is Saturday 18th April 12 noon until 3.30pm.