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 …
Birmingham meeting report
12th October 2024
The Birmingham group had a lovely gathering on Saturday 12th October. 23 people came along, 15 of whom were people with the condition, 2 of whom were newcomers and one recently diagnosed.
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 …
Milford Meeting Report
6th October 2024
We are always very pleased to welcome all those who make the journey to Milford, and a special thank you to those that offer to car share.
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 …
Birmingham Get-together
April 13th 2024
A bright sunny day brought 25 lovely folks to the Birmingham get-together. We had 14 regulars. 3 couldn’t make it due to illness, and 11 newcomers!! – 6 of whom have HSP.