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 …
Service of Thanksgiving for Volunteers – Rochester Cathedral
With many thanks to Phil Bungay from Medway Neurological Network, we were invited to join The Lord-Lieutenant of Kent and The High Sheriff of Kent Service of Thanksgiving for Volunteers on 12th March 2026.
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 …
John Mason
I was devastated to hear of the passing of my great friend John Mason at the end of last year. Just in case any members aren’t aware of this sad news, I thought I’d put a few words on here. As many of you will know, John was a former treasurer of the HSP Group, a role that he held for several years. We were so lucky to have found such a thorough treasurer and with some great assistance from his wife Sonya, kept our accounts up to date with great precision.
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: …