We are holding a zoom meeting for families and carers of children and young adults with HSP, on 29th March at 7:30pm. For joining details, please contact the meeting organisers Penny and June.
Scotland Zoom Meeting Report
22nd October 2022
The meeting went ahead despite the muddle of Meta Rejigging of Facebook, and several zoomed including some new. We spent a lot of time talking about rollators, bikes and other rural mobility aids that could cope with tough surfaces as well as what adjustments Motorbility might make.
Scottish Zoom meeting
There will be a Zoom for the people of Scotland on a provisional date of 22nd October 2022. While this meeting will be via Zoom, in future we will try and fix a location in Scotland suitable for most, for a physical get-together. Currently we have an offer for physical meetings near Glasgow. We did plan a physical meeting in …
Stockport Zoom Meeting
It was expected to have as a F2F meeting as before, but we couldn’t find anyone able to help set up and take down. So we are having a Zoom. It will be a general chat, but people are invited to raise particular points either at the Zoom, or if they want to email me, I can do a bit …
The molecular basis of HSP
New video on our YouTube channel – Andrew Crosby and Emma Baple tell the group about the work their team has been doing in Exeter, including new types of HSP, partly funded by the group. This video was recorded on Weds 24th August 2022. https://www.youtube.com/watch?v=Mfk6qap2ric #HSP #RareDisease #HereditarySpasticParaplegia
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
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.
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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.