The presentations made at our AGM’s in 2025 and 2026 are now also available on our YouTube channel. You can watch these recordings: Flying scholarships for disabled people and London marathon. Ian Bennett. https://youtu.be/cPDviIOsksU Exercising with HSP. Estelle Marshall. https://youtu.be/NMIneNtzb0o Physical Activity in HSP. Renae Stefanetti. https://youtu.be/ZvOcF_gBf0s Overview of HSP, Clinical features, Management and Clinical research. Yi Ng. https://youtu.be/gcmiLkwvRW4 Re-thinking …
2026 AGM on YouTube
The recording of the 2026 AGM, held on Sunday 26th July, is now on our YouTube channel. Video highlights include: Note – at the actual AGM, we ran the AGM before lunch and the awards after lunch. The video includes both the AGM and the awards.
AGM Voting Reminder
We’re into our last week of voting for our AGM, which will be on Sunday 26th July. Will members please check their e-mails and spend a brief minute voting and electing trustees. There is more information on our AGM page: https://hspgroup.org/annual-general-meeting/
Upcoming AGM – 26 July
We’re getting the final preparations ready for our AGM in 3 weeks time, on Sunday 26th July 2026 at 10:30. Members have received a letter giving the details and links for voting, and we ask for action on two fronts: Our AGM will be at: Sense TouchBase Pears, 750 Bristol Road, Selly Oak, Birmingham, B29 6NA. Where it is feasible …
March News Update
A brief update on a few group news items. There is a lovely new edition of our NewsLink newsletter, which has a good load of interesting things for you to read. You can get that from our website – here: https://hspgroup.org/wp-content/uploads/2026/03/HSP-Newslink-issue-58-%E2%80%93final.pdf We have a reminder of upcoming meetings, which are listed here on our website (https://hspgroup.org/hsp-support-group-events/). These include: Estelle Marshall …
Book: Living Well With HSP
There is a new book available for people with HSP. The book has been written by Estelle Marshall, one of our members, who is also a retired physiotherapist. The book has a great overview of the main elements of HSP, and gives you space to write in answers to questions that it asks. This post gives an overview of the …
Rare Disease Day
People know that HSP is a rare disease. Rare Disease Day is celebrated on the last day in February each year, lauched by EURORDIS in 2008. The day aims to raise awareness of rare diseases, and offers a chance for the 300 million people (worldwide) with a rare disease to join together. There are a few HSP related things on …
Happy Christmas!
Wishing all our members, supporters, friends, family and professionals happiness in this festive period! We encourage everyone to spend time however is best for them: with friends or family, or by themselves; at home or out and about; by resting or by being active. If you are having a tough time this year, there are different routes available for support: …
International Day of Persons With Disabilities
Today is International Day of Persons With Disabilities. We support people with Hereditary Spastic Paraplegia (HSP), a rare progressive neurological condition. At first, symptoms are small. As things progress, the lives of people with HSP change. Many will reach a point where they call themselves disabled. That acceptance point can be difficult in the context of negative societal views about …
Latest Newsletter
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.