This post is a copy of most the letter sent from our Chair to members at the end of June about our 2025 AGM, which is on Sunday 27th July starting at 10:30 in Selly Oak, Birmingham. If members have not received this information, please get in touch with us so we can send you the information and relevant links. …
AGM Update
Voting Information Voting has been open for about a week for our face-to-face in person AGM on 27th July, in Birmingham. Members have received an e-mail telling them how to: Around 7% of membership have responded so far, and we thank you for your responses. We’d love to hear from more of you. Some people have registered their attendance at …
AGM presentations on YouTube
All our 2024 AGM presentations are now on our YouTube channel -why not pop over and watch?https://www.youtube.com/@ukhsp-spasticparaplegia #HSP #HereditarySpasticParaplegia #RareDisease Harini Jeyakumar presented her study into the Epidemiology of HSP in England and Northern Ireland, focussing on mental health outcomes. She completed for her dissertation in her Masters of Public Health degree. – https://www.youtube.com/watch?v=ARMtXWg0EOE Estelle Marshall presented her study of …
Reminder of YouTube
This page is a quick reminder of the different videos that we have on our YouTube channel. This post is written on 14th October. We had 3 presentations yesterday, but those have not yet been edited and uploaded. Please check our YouTube channel for the latest updates. Access the channel directly: https://www.youtube.com/@ukhsp-spasticparaplegia The original reason for the channel was to …
Presentation Details – 13th October
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 …
AGM – Last Day of Voting
Today is the last day of voting for our AGM on Saturday 24th August. Members should let us know their thoughts.
Our Chair in the News!
Our Chair, Adam Lawrence, has been busy at his work recently, with two different things being published today. These both talk about HSP, so are useful in raising awareness of HSP and disability. On the AtkinsRéalis careers website he has written a blog post about how adjustments at work have helped, and how his work with their staff network for …