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 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 …
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 …
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 …
Mobility Aids
Interested to hear about the different types of mobility aid someone with HSP might need?
Compassion Therapy
There is a new video on our YouTube channel – how compassion therapy might help people with HSP.
Upcoming Presentations
Coming up – our next presentations, on Zoom. On 2nd September Ian Bennett shares his views on selecting mobility aids, and on 3rd September Hannah Gilbert talks about compassion therapy. Please ask us for more details.
The molecular basis of HSP
New video on our YouTube channel – Andrew Crosby and Emma Baple tell the group about the work their team has been doing in Exeter, including new types of HSP, partly funded by the group. This video was recorded on Weds 24th August 2022. https://www.youtube.com/watch?v=Mfk6qap2ric #HSP #RareDisease #HereditarySpasticParaplegia
- Page 1 of 2
- 1
- 2