Zoom for Families with Children & Young People Report

18th May 2022
A lovely group zoom with seven people and everyone happy to introduce themselves. One person had very recently developed hearing difficulties and decided to leave. He said that he’d be very happy to be included in the next meeting.

Welsh Cross Party Group Pre Zoom

Welsh Parliament

As some of you will not be able to attend the Welsh Cross Party Group at Senedd on Wed May 18th, Mike Cain is intending to have a zoom meeting on Tuesday 17th at 19.00, to hear any views you wish him to express. The HSP Group is represented and at present will raise the following point;- Wales is developing its …

Zoom meeting for families with HSP

We are holding a zoom meeting for families with HSP at 1.30pm on 18th May. If the younger members of your family have HSP we would love you to join us for an informal chat. For joining details, please contact the meeting organisers Penny and June.

Birmingham meeting report

9th April 2022
We would have loved to have had a face-to-face meeting here in Birmingham in April but the meetings are held  in a Day Centre Facility and Covid restrictions still haven’t allowed us to return there as yet. We are hopeful for October.

SPG 11 and SPG 15 Zoom Meeting Report

26th January 2022
We have a separate meeting for these types of HSP because, although they are very similar to each other, they are very different, in some ways, from other types of Hereditary Spastic Paraplegia.


Sheffield Zoom Meeting

Sheffield Jan 2022

Join us for a couple of hours to make friends and have a chat! Please contact the organiser for more information and to register for the event.

Meeting for families with HSP

After holding a very successful last minute exploratory zoom ‘family chat’ meeting on Thursday 18th November, it was agreed by the family members, that an evening ‘family chat’ would be a good idea & that getting together before christmas would benefit families.

Milford Zoom Meeting Report

21st November 2021
Catching up with those who usually join us at Milford was a pleasure, plus welcoming a new couple.


Family chat zoom meeting report

Thursday 18th November 2021

The meetings committee have been wanting to get parents & carers of children, young people & dependant adults with hsp together for a long time.

East Anglia Zoom Meeting Report

11 November 2021
Although face to face meetings are held in Norwich and at Feering, near Colchester, in non-covid times, this zoom gathering was expanded to include the whole of East Anglia.