We are pleased to announce that we have three presentations arranged, as outlined at our AGM. These are all on Sunday 13th October, and will be via Zoom. These presentations will also be recorded and uploaded to our YouTube channel after.
11:00 – Harini Jeyakumar – Epidemiology of Hereditary Spastic Paraplegia in England and Northern Ireland using routine health records (CPRD).
Harini has been studying HSP, and she will cover findings from a recent study on the prevalence and incidence of Hereditary Spastic Paraplegia (HSP) in England and Northern Ireland, with a focus on the mental health outcomes (anxiety and depression) in individuals with HSP compared to those without. The discussion will highlight the implications of these findings for healthcare and support strategies.
14:00 – Estelle Marshall – A study of people with Hereditary Spastic Paraplegia (HSP) around diagnosis and treatment
Estelle has also been studying HSP, and several of you have been in discussion with her about her project. She is pleased to be able to report the findings to the group.
15:30 – Dalila Marra – FROM UNCERTAINTY TO ADVOCACY: LIVING WITH HSP
Dalila had a conversation with me and wrote an essay for the Beacon/M4RD student voice competition. Unfortunately Dalila didn’t win, but she was interested in sharing her observations about the competition.
Please let us know if you would like to attend.
Comments 1
Hi there, I would very much like to attend the first two presentations on Sunday please.