YouTube Update

AGM Recordings

The recording of our 2025 AGM has now been uploaded to our YouTube channel. You can view this directly on this link: https://www.youtube.com/watch?v=Po9WgBxyOPc

We have also added a set of links to all our recorded AGMs on our AGM page, so if you wished to review the AGMs for any year since 2020, you can do so here: https://hspgroup.org/annual-general-meeting/

Presentation Recordings

At the AGM there were quite a few discussions about topics which we have recordings of presentations given after our previous digital AGMs. We have added a set of links to these recordings on our links page, so you can review these here: https://hspgroup.org/links/

To remind you of these presentations – they include both updates from research teams and other advice helping you live with HSP:

  • Insights from large UK HSP cohort. Biomarkers, gait, Dr Channa Hewamadduma
  • Rehabilitation and Physical Activity in HSP, Dr Gita Ramdharry
  • HSP – A Eureka Moment, Lipid processing, Prof Andrew Crosy, Dr Emma Baple.
  • HSP Genes in the UK and building a registry, Prof Henry Houlden
  • Falling With HSP, a physiotherapist perspective, Coralie Seary
  • Mindfulness, Acceptance and Values. Dr Ray Owen
  • Overview of UK Benefits relevant to those with HSP. Citizens Advice Bureau.
  • The molecular basis of HSP. Prof Andrew Crosy, Dr Emma Baple.
  • Choosing Mobility Aids – Getting it right can be life changing. Ian Bennett
  • A compassionate mind approach for living with HSP. Hannah Gilbert.
  • Epidemiology of HSP in England & NI, Mental health outcomes, Harini Jeyakumar
  • HSP Study on Diagnosis and Treatment, Estelle Marshall

As we get more presentations recorded, we will upload links on that page.