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.
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 …
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 …