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:
- We ask all members to vote.
- We ask those planning to attend to register their attendance.
Our AGM will be at: Sense TouchBase Pears, 750 Bristol Road, Selly Oak, Birmingham, B29 6NA. Where it is feasible for you to do so, I encourage you to travel to our AGM on Sunday 26th July. You can hear about our activities of the last year, there will be time for a friendly chat, and we will have a range of relevant presentations in the afternoon.
Please let us know if you plan to attend the AGM. We need to know numbers by 11th July to ensure we have sufficient catering in place. There is a link in your letter/e-mail.
The AGM agenda will cover these items:
- Reports on our activities
- Reports from; Chair, Secretary, Membership Secretary and Treasurer
- Reports from committees
- Presentation of awards
- Minutes of the Annual General Meeting held on Sunday 27th August 2025
- Election of trustees,
- Any other business
I expect the AGM to run until around 11:30. We will break for informal conversation and lunch before a series of presentations in the afternoon. Details for presentations are still being confirmed, but I expect them to run from around 1pm, concluding by 4pm.
We currently have four presentations for the AGM. These give an excellent opportunity to learn more about the HSP world.
University College London Neurogenetic Lab
Collaborative HSP sequencing project: Many people with HSP do not have a confirmed genetic diagnosis, sometimes even after testing. Researchers at UCL will introduce a project to improve the diagnostic pathway for people without a genetic diagnosis.
Newcastle University
Clinical Overview of HSP: This presentation will give a brief clinical overview of HSP. It will cover the difference between clinical and genetic diagnoses. The main symptoms associated with HSP will also be covered, along with approaches for managing them.
Physical Activities in HSP: A second presentation from Newcastle will give an overview of the benefits of exercise & physical activities, in an HSP context. HSP can present some barriers to physical activities, and the presentation will explore what these are, and approaches for managing them.
Ian Bennett
Ian Bennett will talk about a charity he is involved with, Flying Scholarships for Disabled People. Several people with HSP have taken the opportunity in the past, and Ian will explain what happens and how people can get involved. Ian also completed the London Marathon this year in his racing chair, and he will recount this experience, and highlight the links between these two seemingly different activities.
Voting Details
Voting is open to all members, and we are asking for votes in advance, before Saturday 18th July. Members received a link in their letter/email. There are four matters to vote on:
- Do you accept the minutes of the 2025 AGM?
- Do you accept the 2026 accounts?
- Do you accept the 2026 trustee report?
- Do you elect Phil Bungay, Adam Lawrence and Mitesh Patel as trustees?
Our website has the information needed for you to decide your vote. You can view the minutes of the 2025 AGM, the 2026 accounts, the 2026 trustee report, and trustee statements from Phil, Adam and Mitesh. The other trustees are part-way through their three-year terms and are not due for re-election. The documents are here: https://hspgroup.org/annual-general-meeting/