Annual General Meeting (AGM)

2021 AGM – Saturday 3rd July, 10:30am start.

Due to the risk of coronavirus we have decided to hold the meeting via Zoom, like we did in 2020. We hope to be face-to-face in 2022! You will need to have the Zoom app to be able to access the meeting and joining details have been sent to members. The Zoom meeting will be open from around 10:15 to allow people to say hello and check their technology is working. The AGM is expected to run until around 11:15.

The agenda is:

  1. Apologies for absence
  2. Minutes of the Annual General Meeting held on Saturday 4th July 2020
  3. Reports from; Chair, Secretary, Membership Secretary and Treasurer
  4. 2021 awards for fundraising and awareness
  5. Election of trustees
  6. Voting for group name change
  7. Any other business

Voting Details

Our intention this year is to have a wider proportion of members voting for the items at the AGM, so this year we are asking for votes in advance, by Saturday 26th June. Those of you who registered for postal voting back in February will receive a paper voting form, which you should complete and return. All other members should use the voting link provided in our AGM communications to vote. All votes must be received by Saturday 26th June so that results can be checked and collated in time for the results to be announced at the AGM.

There are five items to vote on:

  1. Do you accept the minutes of the 2020 AGM?
  2. Do you accept the 2020 accounts?
  3. Do you accept the 2020 trustee report?
  4. Do you elect Mike Cain as a trustee?
  5. Would you vote to change or keep the group name?

Our website has the various documents giving you the information to allow you to decide your vote on items one to four. You can view the minutes of the 2020 AGM, the 2020 accounts, the 2020 trustee report and a trustee statement from Mike Cain. All of the other trustees are partway through their three year terms and are not due for re-election this year. You can view these documents on our AGM page.

Group Name Change

There is an idea to change the name of the group to appeal to a wider audience, and the AGM is your opportunity to vote on this important matter. The process of re-naming will not change the way that we work or the support that we provide. Whichever decision is taken we can use it to raise our publicity.

The trustees believe that any of the name options would be good for us, but it is important that our name feels right for most of our members. We will use the result of the vote to decide about changing the name of the group. If there is a clear majority for one choice, the matter is straightforward, and we will change the name in favour of that vote. In the event that there is no clear winner, we will consider the results, discuss and make a decision.


The name HSP UK would be in line charities that provide support to members or researchers in conditions that are similar to HSP. Ataxia UK is the equivalent charity for those with Ataxia, MD UK supports those with muscular dystrophy, and CMT UK supports those with Charcot Marie Tooth disease. Ataxia, MD and CMT have all been mis-diagnoses for HSP, and a name in line with those charities may make for an easier support path for those whose diagnosis changes. Furthermore, the name identifies where we are in the world, which may make us easier to find, particularly with internet search results.

HSP Foundation

The name HSP Foundation would be in line with the HSP support group in the USA, the Spastic Paraplegia Foundation, and similarly in line with Carina Thurgood’s charity The Maddi Foundation, which is seeking a cure for SPG15. One of the dictionary definitions of Foundation is an organisation providing money for a special purpose. As a charity we provide support to those with HSP, and our special purpose is striving for our support to be a strong foundation to improve people’s knowledge and wellbeing.

HSP Group

The name HSP Group simply shortens our current Hereditary Spastic Paraplegia down to its acronym and drops the word support. One of the common stories at the start of people’s journey’s with HSP is them initially deciding that they don’t need a ‘support group’. As our HSP progresses our needs change, with some deciding they would like more support after a time. Removing the word ‘support’ from our name could help us provide support earlier in the journey for those who have not yet fully accepted/appreciated their needs are changing.

Hereditary Spastic Paraplegia Support Group

The name Hereditary Spastic Paraplegia Support Group is our heritage. The name describes exactly what we do, and helps reinforce that our primary aim is about giving practical day-today support to people with HSP. Whilst we raise funds for and work with the research community, that is about getting day-to-day support which people need now, more than supporting projects where the outcomes are uncertain or a long way in the future. Retaining our current name demonstrates that we are a solid point of reference, here for the long term.

Please use your membership and vote in our AGM proceedings. By using postal and electronic voting we should make it much more straightforward for more of you to have a say in the way the Group is run. Please complete all of the fields in your voting form. We will be checking against our membership database to verify your details, and each member is entitled to vote once on each of the five items. We need to receive your votes by Saturday 26th June to give us a clear week to check and collate your votes in time for the results to be announced at the AGM.

AGM Summary

As described above you can hear about our activities of the last year, see who will be the winners of our fundraising award and our raising awareness award, and we will have plenty of time afterwards for a friendly chat. If you have still not used Zoom to go to one of our meetings, please give it a try. It allows you to take part in our AGM from the comfort of your own home and get some interactions with other people. Since we started holding Zoom meetings in summer 2020 we have heard from members that these helped their wellbeing. You can choose simply to listen and watch, or take a more active role in discussions.

Like 2020, there will be a number of presentations after the AGM. These will be on different days over the summer, which we should be able to confirm fully at the AGM.

For more information on the AGM please contact us.

The event is finished.


Jul 03 2021


The Zoom meeting will be open from around 10:15 to allow people to say hello and check their technology is working.
10:30 am - 11:15 am
QR Code