HSP Support Group Meetings
We in the HSP Support Group like to see people with Hereditary Spastic Paraplegia (HSP) getting together. We believe that two people chatting over a coffee or a beer can be as valuable to them, as a meeting with a speaker may be to others.
We understand that whilst some people prefer to get to know others who are in a similar situation, there are those who are keen to listen to speakers, while others enjoy a combination of both! We all have so much to share, be it living with Hereditary Spastic Paraplegia, or sharing life with someone who has the condition.
Who can attend?
Our meetings are open to anyone of any age who has an interest in HSP. Many people come because they have HSP themselves, other people because they have a family member or because they support someone with HSP. At our meeting in Milford in Surrey, there is the opportunity for supporters and people with HSP to meet separately for part of the session. There is no need to belong to the HSP Support Group to attend any of our meetings. Everyone is very welcome at all our gatherings.
If you’d like either to come to one of our meetings or to volunteer to arrange to meet others in your area, just get in touch through our Contacts page. We’d love to hear from you.
Why do people like to come to our meetings?
Oh wow! 👩🏫 Didn’t realise there was someone so close!
From the very first meeting I attended in Milford nearly 20 years ago, to the current day, I’ve realised just how valuable these get-togethers are. What we all learn from each other and the friendships that develop can be life changing.
Apart from just socialising, I like to meet people who are dealing with the same things that I am and I like to listen to how they deal with their situations.
It was lovely to meet everyone! It helped to know there’s folks out there who totally get what my son has.
"Thanks for the opportunity to talk to other families with HSP. It was a first for me and so nice not having to explain our condition as everyone knew what I was talking about."
We try to organise a variety of different types of meeting wherever we can. We have informal gatherings in pubs or hotels, and we have other meets in day or community centres and in local halls. Sitting in a pub or coffee shop, a few people enjoy a friendly chat with others who understand the daily challenges they face. At more spacious venues, perhaps 20 or more people meet up to listen to a speaker or to discuss HSP related topics as a group. There is always the chance to exchange information and support with others and to have one-to-one conversations, for those that wish too. To get a flavour of the range of possibilities, see the introductions our volunteer meeting organisers have written to describe their own meetings.
As mentioned, the meets are all individual and are organised by different members of the HSP Support Group, but they are generally held once or twice a year. This is usually in spring and autumn but, occasionally, some meetings have taken place in January to brighten the grey days after Christmas and New Year. Most of the get togethers last for 2 – 3 hours but people can come and go during that time if they wish. There’s no obligation to stay for the whole time. For those attending our meeting in Ashburton, Devon, there is the option to extend the meeting into a weekend break as some do, though many just attend the meeting itself.
I've attended many meetings over the years, both face to face & zoom chat. I always come away feeling rejuvenated & positive. Two great ways of getting people in the hsp world together, to socialise, learn & make friends.
Be it zoom or face to face meetings, there is always the opportunity to meet others in a similar situation, share experiences and have a chat and laugh. Meeting new people and catching up with those you know is always a bonus.
Family Zoom meetings
Over 2022 - 2023 The HSP Support Group has hosted a series of Zoom meetings for families who have a child or children with HSP.
We recognised that the small number of families affected by HSP in the UK makes it problematic for them to meet in person and we understood the numerous commitments involved. We hoped that Zoom meetings might be helpful in avoiding the need to travel large distances. The response from those who have attended has been very positive and various days and times have been tried.
The HSP Support Group is keen to support families with children that have HSP.
We feel that it would be better and more encouraging to have a parent, who has a child with HSP, running Zoom meetings to connect with others, to give and receive help and support.
If you are interested, please do contact us, your help will be highly appreciated.
The HSP website is a great tool especially Milford Meetings, but Sue & I can only safely get there during the summer - when it is light as the street lighting south of Guildford is appalling. We have tried the train but the station is a long way away! And at the time of the monthly HSP meetings I’m running another meeting on zoom!!
Covid-19 has meant that face-to-face meetings have been on hold during the pandemic but they will be up and running again once it is safe for them to resume. However, we have now discovered the world of virtual meetings. Thanks to the Zoom platform, we have already held several on-line meetings. We have also conducted recent AGMs on Zoom and our fears of a low turnout were proven to be unnecessary as we probably had more members attending an AGM than we’ve ever had before. Ian, who organises our Ashburton meeting, even hosted a zoom meeting on Christmas Day for anyone who, especially due to the restrictions, was alone and possibly feeling a little low. Fun was had by the five members attending, and there was also an informal quiz!
One big advantage of zoom is that there are some members who find it very difficult to attend a physical meeting because of their mobility problems, but using their phone, tablet or PC to attend a meeting from the comfort of their home is easy for them and allows them to participate. Having said that, there are some people who are looking forward to the face-to-face meetings beginning again. We’re aware that some people may be afraid of or unfamiliar with zoom and it can definitely seem a little bewildering at first, but it’s really very straightforward once you get used to it. If any members would like to join us at a future zoom meeting but are baffled by the technology, we’re always here to help. Be reassured that we’re finding people are picking it up very quickly.
Another positive is that new meetings have been established via Zoom in both Scotland and Wales and we hope that these will be able to meet face to face with the existing meetings soon.
Our zoom meetings have been so popular that we hope to continue with them alongside the face-to-face meetings when they start again. You can read about some of these virtual meetings on our meeting report page.
The pandemic has made our HSP group and many other organisations, for that matter, rethink how to make it possible for groups of people to meet and socially interact and for that reason, Zoom has been a wonderful answer for so many people. There can be many problems with those kinds of meetings with people perhaps finding difficult or uncomfortable to start or break into a conversation to make a point. For that reason, it is a real bonus to have the option of meetings and Zoom gatherings open to us. Zoom also saves the business of travel so has a lot to offer. Meeting in person is always a pleasure for those who can get along and we have had some good speakers at these events so very simply, I think that there is a case for both, but that of course means more work in organising things
I have met others in the same situation as me and have made new friends. I’ve also learned so much from listening to people at meetings, whether they are informal social occasions or whether there is a speaker.
So far, we have established face-to-face meetings in:-
- Ashburton in Devon
- Birmingham in West Midlands
- Feering near Colchester in Essex
- Hitchin in Hertfordshire
- Malton in North Yorkshire
- Milford near Guildford in Surrey
- Newcastle in Northumbria
- Norwich in Norfolk
- Stockport in Cheshire.
We are keen to see more meetings set up across the country and some members of the HSP Support Group have kindly volunteered to explore the level of interest in meetings in their own home areas.
As meeting organisers, we love to see:-
- A gathering of people chatting
- Someone demonstrating an item of equipment
- A group absorbed by what a speaker is saying
- A person new to the meeting settling in and relaxing
- Old friends greeting one another
- Someone gaining the medical or practical support they need because of discussions at a previous meeting.
New Meeting Organisers
The HSP Support Group is always after volunteers to organise regional meetings. We’re delighted that several members have recently offered to help us with this. They have all said they’ll help get HSPers together in their local areas. These are in Scotland, South Wales and the north of England. We hope to have new meetings in these locations once face to face meetings become possible again. In the meantime, Zoom meetings have already been held in Scotland and south Wales. Do keep an eye on the website and our newsletter for information about these new meetings.
We can’t thank these members enough for taking on this very important role. Although The HSP Support Group already runs a number of well established meetings, there are many areas of the UK where HSP meetings don’t currently take place. We would like all HSPers to be within reach of a meeting so if you are interested in arranging to meet up with other HSPers in your area, please get in touch with us via our Contacts page. HSP gatherings don’t have to be formal affairs, as you can see from the variety of meetings we already hold which we’ve described on our meeting locations page. We’ll give you all the help you need and we now have a very comprehensive guide that gives you loads of tips and guidance on setting up and hosting a regional meeting, whether on Zoom or face-to-face.