adam lawrence

March News Update There is a news update on our website with information about a new newsletter, upcoming group meetings, a new book about lving well with HSP, and more! hspgroup.org/march-news-upd… #HSP #HereditarySpasticParaplegia

There are two HSP related things for Rare Disease Day - a global virtual meeting hosted by @SpasticWorld and streaming of a Broadway show about HSP - see our website for more details: hspgroup.org/rare-disease-d… #RareDisease #HSP #HereditarySpasticParaplegia

Wishing all our members, supporters, friends, family and professionals happiness in this festive period! We encourage everyone to spend time however is best for them. If you are having a tough time this year, support is available - see our website: hspgroup.org/happy-christma…

Final blog post of the year - review of 2025: hspjourney.blogspot.com/2025/12/review… #HSP #RareDisease #HereditarySpasticParaplegia

More assorted blog posts for December: Muscle update: hspjourney.blogspot.com/2025/12/pilate… Fatigue update: hspjourney.blogspot.com/2025/12/fatigu… Bladder update: hspjourney.blogspot.com/2025/12/bladde… #HSP #RareDisease #HereditarySpasticParaplegia

Assorted blog updates for December - * New shoes and ferrules: hspjourney.blogspot.com/2025/12/new-sh… * Bladder ultrasound results: hspjourney.blogspot.com/2025/12/bladde… * Visit from Occupational Therapist: hspjourney.blogspot.com/2025/12/occupa… #HSP #RareDisease #HereditarySpasticParaplegia

Today is International Day of Persons With Disabilities. We support people with Hereditary Spastic Paraplegia (HSP), a rare progressive neurological condition. As things with HSP progress, many reach a point where they call themselves disabled. Accepting this can be difficult.

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

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

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

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-…

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

Final day of voting - please get your votes in

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

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

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

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.

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

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…

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