Do you remember the ice bucket challenge from a few years ago, raising awareness and money for ALS? Now, we have the potato pants challenge doing similar for HPS and PLS. The challenge is to get people to feel some of what it is like to walk with HSP. You challenge 3 people to walk around with potatoes in their …
AGM Presentations on YouTube
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 …
Colchester Branch Meeting Report
19th April 2026
We met at Feering, near Colchester in Essex on 19th April 2026 for our Spring meeting.
Birmingham meeting report
18th April 2026
A group of around 30 got together at the Kenrick Centre in Birmingham to chat, share and build relationships over lunch. There were new faces and old and everyone all came together and united around our shared experiences of life with HSP.
Milford Afternoon Tea report
11 April 2026
Such an afternoon! The day started dull, with the afternoon bringing sunshine and brightness, which very much reflected the Milford meeting. Sadly, circumstance such as ill-health, no dog sitter and enjoying holidays prevented people joining us.
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 …