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.
Fundraising Stories
We have set up a new page here to allow us to let you know about the amazing things which people are getting up to raising money for us. You have several options:
Viking Marathon
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
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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.
