Viking Marathon

In October Tom Bell raised money for us by running a marathon in full Viking gear. You can listen to him talking to BBC Radio about this: If you’d like to donate to this, use this Just Giving link:

Mobility Aids

Interested to hear about the different types of mobility aid someone with HSP might need?

Compassion Therapy

There is a new video on our YouTube channel – how compassion therapy might help people with HSP.

How to donate!


Details of how you can dontate to support us.

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.

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:

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: If you live elsewhere in England: Two key issues are around the availability of tickets for people with disabilities from ticket machines, …

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

AGM Sat15th July via Zoom

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