We are pleased to announce that the group AGM will be on Saturday 24th August. For more details please see our website: hspgroup.org/agm-details-24… #HSP #HereditarySpasticParaplegia #RareDisease

It is the last day of voting for our AGM on Saturday 24th August. Members should let us know their thoughts.

Members should remember that it is our AGM tomorrow, via Zoom. Please join us and hear about how the group is doing. We also have an urgent request for help. Looking forward to seeing everyone online.

Making History carrying the #Paralympics2024 Torch through the Channel Tunnel with a great team of people only 3 days to go until Paris 2024 Paralympic Games C4 Paralympics Dan StokeonTrentLive BBC Radio Stoke Sport

The recording of our 2024 is now on YouTube. The AGM includes an important charity update, where we request people to come forwards to be trustees for the group. Please let us know if you ca help. youtube.com/watch?v=UZMv2p…

There were two more gold medals for #TeamHSP at the #Paralympics from Rebecca Hart. Excellent!!!!! #HereditarySpasticParaplegia #RareDisease

This is everyone from #TeamHSP at the Paralympic Games. A great event! #HereditarySpasticParaplegia #RareDisease #EuroHSP Spastic Paraplegia Foundation #HSPandPLS UK HSP Support Group

Our next Feering meeting (near Colchester) is Sunday 20th October in the afternoon. This will be an informal chance to meet other people with HSP and to exchange experiences and tips. Everybody is welcome. Please let us know if you plan to attend. hspgroup.org/events/colches…

If you are researching therapies for #HSP, the 2025 #EuroHSP prize is now seeking entries. More details: eurohsp.eu/news/details/a… #HereditarySpasticParaplegia #RareDisease

The group has a couple of presentations coming up on Zoom. These will be on Sunday 13th October. More details available in the next day or two.

Remember - we have 3 Zoom calls coming up on Sunday 13th October. Details are on our website: hspgroup.org/presentation-d… #HSP #HereditarySpasticParaplegia #RareDisease

Reminder of our YouTube channel. There is a new post on our website reminding people about our YouTube channel. hspgroup.org/reminder-of-yo…

Another video on our YouTube channel - from 13th October. Estelle Marshall talks about diagnosis and treatment of HSP - youtube.com/watch?v=f-hobn… #HSP #HereditarySpasticParaplegia #RareDisease

All our 2024 AGM presentations are now on our YouTube channel -why not pop over and watch? youtube.com/@ukhsp-spastic… #HSP #HereditarySpasticParaplegia #RareDisease

About 7% of out membership have cast their votes and/or registered to attend our face-to-face AGM on Sunday 27th July in Birmingham. This post also gives additional travel details for those who are not certain. It would be great to see many of you there! hspgroup.org/agm-update/

Our AGM is approaching fast. We have one week left of voting. It is important for us to hear how our members feel about what we do. Members have a week left to: * Vote in our AGM. * Let us know they are coming to our AGM in Birmingham. hspgroup.org/annual-general…

We had a brilliant AGM in Birmingham today. This is link to a quick summary with key links to things chatted about. Thank you to everyone who attended. hspgroup.org/brilliant-agm/

YouTube Update We have now uploaded our 2025 AGM onto YouTube, and our website now has links to all our recorded AGMs and to presentations made after these recordings. hspgroup.org/youtube-update/