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
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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
Burnley Meeting Report
24 June 2023
We met at Mount Zion Church, in Cliviger, Burnley, and my friend helped with drinks and snacks.
One couple came, which allowed the opportunity for a more in-depth discussion. We talked about physiotherapy and plans for the future.
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.
Colchester Branch Meeting
23rd April 2023
We met at Feering Community Centre, near Colchester in Essex. We were very pleased to be joined by two new members as well as those we know well.
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Milford April Afternoon Tea Report
22nd April 2023
At our November meeting last year, we had agreed to have a ‘Show and Tell’ session about mobility aids at our meeting yesterday. True to form, we did. Mobility aids were not walking sticks, but attachments for wheelchairs.
Birmingham meeting report
15th April 2023
It was great to be able to see everybody at our first ‘face to face’ get together since Covid. All 16 of us (including five people who hadn’t been to the Birmingham Support Group Meeting before), enjoyed a super buffet lunch and an informal chatty afternoon.