The latest edition of our newsletter, NewsLink is now available. https://hspgroup.org/wp-content/uploads/2025/10/HSP-Newslink-issue-58-%E2%80%93-final.pdf Have a read to hear about the latest activities in our world. You can find out more about upcoming HSP books, key links to useful places, world HSP day on October 17th, upcoming meetings, and reports about meetings, participating in research projects, and a couple of members stories.
World HSP Day – October 17th
On Friday October 17th, Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) communities around the world are uniting to raise awareness about these rare diseases. This year, 17 associations and 3 foundations from 15 countries are participating in a global campaign. If you are interested in why this date has been chosen, read on EuroHSP: https://www.eurohsp.eu/events How Can I …
Medway Neuro-Tech 25
4th September 2025
To celebrate ten years of the Medway Neurological Network, the group organised the Medway Neuro-Tech 25 at the Universities at Medway, Chatham.
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: …
Brilliant AGM
We held our AGM today in Birmingham. It was great to see many of our members there in person. We had some great discussions about lots of different topics, both about what was being said and also in the times between the different aspects. We elected our trustees, accepted our reports and gave an update on what has been going …
2025 AGM – Voting ends soon
We’re into the last couple of days of voting for our AGM. We would be delighted for more of our members to give us confirmation of our approach. We also still have some capacity for more at our face-to-face AGM in Selly Oak, Birmingham on Sunday 27th July. Members, please let us know if you wish to attend. Further details …
AGM – Last week of voting
Our AGM is approaching fast. We have one week left of voting. It is important for us to hear how our members feel about what we do. Members have a week left to:* Vote in our AGM.* Let us know they are coming to our AGM in Birmingham. Details for these digital tasks are in an e-mail we sent at …
2025 AGM Notification
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 …
May monthly meeting with Estelle
May 2025
Eight people joined the May monthly meeting with Estelle. This session is one of our regular, informal, Zoom meetings held on the third Tuesday of each month.