Annual General Meeting (AGM)
The AGM of the HSP Support Group is held in the summer each year.
The formal AGM receives and approves the minutes, accounts and reports of the Groups activities for the year just completed (our year runs 1st May to 30th April) and elects Trustees. Member voting on these matters is completed in advance of the AGM.
Since 2020 we have recorded our AGMs, and they are available to watch on our YouTube channel. This table gives quick access:
|
Year |
Link |
Comments |
|
2025 |
Birmingham: New trustees |
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2024 |
Digital: Call for help |
|
|
2023 |
Digital: Change of treasurer |
|
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2022 |
Third digital AGM |
|
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2021 |
Start of 1000 mile challenge |
|
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2020 |
First digital AGM due to Covid |
2026 AGM
The 2026 AGM will be in person, from 10:30am - 4:00pm, on Sunday 26th July at Sense Midlands, following for format established in 2025.
Address:
Sense TouchBase Pears
750 Bristol Road
Selly Oak
Birmingham
B29 6NA
AGM Agenda
The agenda for the AGM 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
The AGM will run until around 11:30am, thereafter we will break for informal conversation and lunch before a series of presentations in the afternoon including:
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. The project will identify people who may benefit from different types of genetic testing. They seek to co-create the programme with people living with HSP, and the session will gather your insights to help shape the project. You will be able to ask questions, share experiences and these contribute to shaping the next steps of the project. You can ask questions about genetic testing, result interpretation, risks or anything else.
Speaker: Dr Lorenzo Perilli, Visiting Researcher, PhD Student, Paediatric Neurology Resident Doctor
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. This type of presentation is most useful for those who are newly diagnosed, or whose symptoms are progressing quickly. You will have the opportunity to ask questions.
Speaker: Dr Yi Shiau Ng, Clinical Senior Lecturer, Neurology Consultant
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. The presentation will conclude exploring research which can measure physical activities in HSP, and the relevance for that work. You will have the opportunity to ask questions.
Speaker: Dr Renae Stefanetti, Research Associate, Exercise Physiologist
Flying Scholarships for Disabled People/London Marathon: 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. Those of you who have registered for postal voting will receive a paper voting form, which you should complete and return. All other members should use the link provided in the AGM email send on 26th June. There will not be an opportunity to cast your votes during the AGM. All postal and electronic votes must be received before Saturday 18th July so results can be checked and collated, and announced at the AGM.
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?
All the documents you need to make a decision are below.
Reports for the 2026 AGM
Read 2026 Trustee Report
Read 2026 Charity Commission Accounts
Read 2026 Trustee Statements
Read 2025 AGM minutes
2025 AGM
The format for our 2025 AGM is back to a face-to-face meeting. The 2025 AGM will be held in person in Birmingham on Sunday 27th July 2025. We hope to be able to record the AGM and upload this to our YouTube channel after the event.
This means that we are also returning to face-to-face presentations being made to help share information and stories with members. Similarly to the AGM we hope to record these for uploading to YouTube. We are likely to keep with some digital events over the summer, and subsequently uploaded to our YouTube channel.
The group has reflected on our digital AGMs over the period 2020-2024. This year we will be paying attention to how the AGM and presentations feel to see how the balance sits between face-to-face meetings with socialising, and digital meetings open to all members with an internet connection.
Reports for the 2025 AGM
Read 2025 Trustee Report
Read 2025 Treasurer Report
Read 2025 Trustee Statements
Read 2024 AGM minutes
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- 2025 AGM
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- 2025 AGM
Archive of previous AGM documents
The links below are the record of the documentation for our recent AGMs. These are arranged chronologically, with 2024 at the top, going through each year back to 2019. 2020 was the last year where voting was by show of members hands at the AGM. For 2021 and beyond, voting has been available to all members.
2024 Reports
The 2024 AGM was held online on Saturday 24th August 2024.
Read 2024 Trustees Report
Read 2024 Treasurer Report
Read 2024 Trustee Statements
Read 2023 AGM Minutes
2023 Reports
The 2023 AGM was held online on Saturday 15th July 2023.
Read 2023 Trustees Report
Read 2023 Treasurer Report
Read 2023 Trustee Statements
Read 2022 AGM Minutes
2022 Reports
The 2022 AGM was held online on Saturday 16th July 2022.
Read HSP Trustees Report 2022
Read HSP Treasurers Report 2022
Read HSP Trustee Statements 2022
Read HSP Minutes of AGM2021
2021 Reports
As a result of Coronavirus restrictions the 2021 AGM was held online via Zoom on Sat 3rd July 2021.
Read HSP Trustees Report 2021
Read HSP Treasurers Report 2021
Read HSP Trustee Statements 2021
Read HSP Minutes of AGM2020
Read Charity Commission Accounts
2020 Reports
As a result of Coronavirus restrictions the 2020 AGM was held online via Zoom on Sat 4th July.
Read AGM Trustee Report 2020
Read AGM Treasurers Report 2020
Read AGM Trustee Statements 2020
Read AGM 2019 minutes
2019 Reports
The 2019 AGM was held on Sat 13th July.
Read HSP Trustees Report (2019)
Read Accounts summary statement of financial activities (2019)
Read Accounts summary balance sheet (2019)
Read Accounts summary income and expenditure (2019)