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…

Update on Paralympic Games for team #HSP - We have 2 Silver 🥈 (Swimming and Rowing) and 1 Bronze 🥉 (Javelin) #RareDisease #HereditarySpasticParaplegia

The first four medals from #TeamHSP in the #Paris @paralympics Silver from Roman Polianskyi and Toni Ponce, and Bronze from Dayna Crees and Austin Smeenk #HereditarySpasticParaplegia UK HSP Support Group Aepef Spastic Paraplegia Foundation #hspandpls

Its the first #Gold for #TeamHSP in the @paralympics. Congratulations Rebecca Hart #HereditarySpasticParaplegia #RareDisease UK HSP Support Group Spastic Paraplegia Foundation #hspandpls

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

I found out just recently that there was another athlete with HSP in the Paralympics. He is Daniel Mendes, swimming for Brazil. hspjourney.blogspot.com/2024/09/more-o… He also adds a bronze medal to the Team HSP tally. #HereditarySpasticParaplegia #HSP #RareDisease

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

Another new blog post - this one gives links to two separate podcasts talking about HSP, which you may like to listen to. All through the excellent work by EuroHSP. #HSP #RareDisease #HereditarySpasticParaplegia hspjourney.blogspot.com/2024/09/hsp-on…

Ok, so sales have been ridiculously low for the past few weeks, with social media throttling our reach and fatigue kicking my butt. So I'm going to practice what I preach and ask for help. Can you give us a boost to help us stay afloat by: placing an order, sharing our posts, or

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.

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

New blog post - HSP Diagnosis and Treatment, presentation to UK HSP Support Group in October. hspjourney.blogspot.com/2024/11/2024-a… #HSP #RareDisease #HereditarySpasticParaplegia

We're into the last couple of days of voting for our AGM in Birmingham on 27th July. We have some capacity at the venue. Members, please let us know! Further details in your e-mails or here: hspgroup.org/2025-agm-notif… Voting and attendance forms will close on Saturday 19th July

Final day of voting - please get your votes in

We have our first Scotland meeting coming up on Sat October 25th, in Glasgow. There are details on our website: hspgroup.org/events/glasgow…

October 17th is world HSP day. You can help us raise awareness about HSP and PLS. Have a look at our website for more information. More to follow in the next few days. hspgroup.org/world-hsp-day-…

HSP and PLS groups unite – raising awareness, building community, seeking a cure for Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). Together we are Stronger. Together we speak louder. Please: ✅ Share our posts ✅ Tell your story ✅ Use #HSPandPLS

Help us mark the first HSP & PLS World Day. Send your photos to share on October 17th. Photo can be you and/or others making the gesture, just the gesture, just you. We can help. Please like & share these pics! #HSPandPLS #HSPPLSWorldAwarenessDay #ChampionCures #MedicalResearch

More details about how you can take part in the day are on our website. hspgroup.org/world-hsp-day-… Join in a worldwide Zoom call, or share your pictures. #HSPandPLS #HSPPLSWorldAwarenessDay #ChampionCures #MedicalResearch