In order to replace physical meetings in Stockport, Malton, Newcastle, and Scotland whilst we find alternatives, there will be a series of regional zooms initially on a Sunday afternoon but will be on different days/times depending on feedback. The regions will be North West England, North East England/ North Yorkshire and Scotland. The aim is to listen to people with …
Upcoming Presentations
Coming up – our next presentations, on Zoom. On 2nd September Ian Bennett shares his views on selecting mobility aids, and on 3rd September Hannah Gilbert talks about compassion therapy. Please ask us for more details.
Scotland update July
We have not yet been able to fix a place for Face to Face meetings. We’ve been offered a room, but nobody to host the meeting, so have decided to run zooms which at least will include the Highlands and islands.
Presentations on Saturday
This weekend – our first summer presentations via Zoom. Saturday 22nd July09:00 – Ela Curic – The diagnostic journey10:00 – Cinzia Rinaldo – Spastin recovery in hereditary spastic paraplegiaAll welcome – ask for details.#HSP #HereditarySpasticParaplegia #RareDisease
AGM on Saturday
The groups AGM is on Saturday 15th July at 10:30, via Zoom.Hear about the years events, awards and trustee elections.All are welcome!#HSP #HereditarySpasticsParaplegia #RareDisease
AGM – 15th July
News: Our 2023 AGM will be on Saturday 15th July, at 10:30.This will be through Zoom to allow as many members to attend.#HSP #RareDisease #HereditarySpasticParaplegia
Zoom Scotland Report
21 May 2023
We had an interesting discussion about how the fund that is supposed to exist for Scots to travel to centres in England can be accessed. It seems one exits to allow those on the islands to travel within Scotland for treatment.
Scotland update
We have been a bit quiet on the Scotland front so I thought I should update you. There have been a few Zooms over the past months and the plan was to wait until the planned meeting of the Scottish CPG at the Holyrood parliament on 15th March.
Scottish Zoom meeting
There will be a Zoom for the people of Scotland on Sunday 21st May, from 3pm-5pm. Remember you can drop in and out of this meeting. Please contact the meeting organiser, Mike for more details. We have a Whats App group if you want to join, please also contact Mike for details.
Zoom meeting for families and carers of children and young adults with HSP
We are holding a zoom meeting for families and carers of children and young adults with HSP, on 29th April at 8pm. For joining details, please contact the meeting organisers Penny and June.