In 2021 Tom Bell ran a Viking challenge to raise money for the group. He is now going to run a full marathon on 15th October 2023 in the Viking gear. You can sponsor him here: https://www.justgiving.com/page/tomvikingmarathon Tom says: Yorkshire Marathon, 15th October, full Viking battle gear (approx 14kg in total). Becca’s dad (Peter) has Hereditary Spastic Paraplegia (“HSP”) and …
Railway ticket office closure
Proposals to close ticket offices at railway stations are currently being consulted on. If you wish to share your views then you have until 1st September 2023 to make them known. If you live in London: https://www.londontravelwatch.org.uk/ticket-offices-have-your-say/ If you live elsewhere in England: https://www.transportfocus.org.uk/train-station-ticket-office-consultation/ Two key issues are around the availability of tickets for people with disabilities from ticket machines, …
Potato Pants Festival
The Potato Pants Festival will be held on Saturday 26th August 2023 Noon till 9pm, at Cobham Sports & Social Club – Wimborne, BH21 3DA. Adult tickets £11, children go free. Listen to good music, learn about HSP and your ticket cost helps a great cause. http://potatopantsfestival.co.uk/ The Potato Pants Festival was created in 2015 with several objectives in mind. …
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
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.