We have a new meeting location near Leeds/York on April 27th. More details on our website:
hspgroup.org/events/meeting…
#HSP #RareDisease #HereditarySpasticParaplegia

Our next meeting in Birmingham is coming up on April 13th. More details on our website:
hspgroup.org/events/birming…
#HSP #RareDisease #HereditarySpasticParaplegia

Our next meeting in Feering, Colchester is coming up on April 21st. More details on our website:
hspgroup.org/events/colches…
#HSP #RareDisease #HereditarySpasticParaplegia

Just before #RareDiseaseDay closes, a thread with the highlights from my #HSP survey highlights. For more details see my blog:
hspjourney.blogspot.com/2024/02/2023-s…
#HereditarySpasticParaplegia

This week we Boston Children's @FMKirbyNeuro report in Nature Communications a cell-based phenotypic high-throughput assay for AP-4-related #hereditaryspasticparaplegia . Screen of ~29K compounds with Astellas Pharma identified BCH-HSP-C01 👉🏽 #raredisease CureAP-4 CureSPG50 Spastic Paraplegia #HSPandPLS

info. share adam lawrence UK HSP Support Group
#HSP #SPG7 #Ataxia #RareDisease

Excellent talk last night by Darius Ebrahimi-Fakhari during the Child Neurology Society Research Committee Webinar!

Excited to be part of the SP-CERN Texas Children's to help move forward HSP and PLS research.

You can listen to Tom Bell talking to BBC Radio about running a marathon in Viking Gear to raise money for us:
bbc.co.uk/sounds/play/p0…
If you'd like to donate to this, use this Just Giving link:
justgiving.com/page/tomviking…
#HSP #RareDisease #HereditarySpasticParaplegia

New blog post - write up of the UK HSP Support Group AGM presentation - choosing mobility aids. Plenty of advice for people on how to make the best choice for them.
hspjourney.blogspot.com/2023/11/2023-a…
#HSP #RareDisease #HereditarySpasticParaplegia

New blog post - write up of the
UK HSP Support Group
AGM presentation - compassion therapy. Various information on how a compassionate approach may be beneficial for people with HSP.
hspjourney.blogspot.com/2023/11/2023-a…
#HSP #RareDisease #HereditarySpasticParaplegia

New video on youtube - how compassion therapy might help people with HSP.
youtube.com/watch?v=3X5rec…
#HSP #RareDisease #HereditarySpasticParaplegia

New news story on our website - how you can help us by donating to the support group.
hspgroup.org/how-to-donate/
#HSP #HereditarySpasticParaplegia #RareDisease

🚨BREAKING NEWS🚨

Nearly 75% of calls to equality helpline about discrimination come from Disabled people.

DR UK: The fact that every year more Disabled people are seeking support on discrimination underlines that the Equality Act just isn’t working.

disabilitynewsservice.com/nearly-three-q…

Marlene Scheffold representing our lab Ebrahimi-Fakhari_Lab at the @FMKirbyNeuro Retreat - showing small molecule screening platforms for #HSP in a joint research project between our group Boston Children's and Astellas Pharma US . Preprint is online! Well done Marlene! def-lab.org

On Wednesday 8th November 2023 you can bid in an auction for a rocking horse made by our member, Terry Duffy. The auction is all on-line and starts at 10:30am (UK time).

bourneendauctionrooms.co.uk/catalogue/lot/…

#HSP #HereditarySpasticParaplegia #RareDisease

Well done to our Viking pal Tom, who ran the Yorkshire Marathon on Sunday in full Viking gear to raise money for a charity close to his and his family's hearts - UK HSP Support Group.

Link below to Tom's Just Giving Page❤️
justgiving.com/page/tomviking…
#charityrun

New blog post - a summary of my excellent weekend last week in Innsbruck for the #EuroHSP meeting. hspjourney.blogspot.com/2023/09/eurohs… - Good to meet up in person with people I've not seen since 2019!. Great to get a project update and share news. #HSP #HereditarySpasticParaplegia

Our latest video is on YouTube. Ian Bennett talks about the different mobility aids that people with HSP use, and some of the considerations for choosing them.
youtube.com/watch?v=0MhAzE…
#HSP #HereditarySpasticParaplegia #RareDisease

Coming up - our next presentations. 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. #HSP #RareDisease #HereditarySpasticParaplegia

New website page - fundraising stories:
hspgroup.org/fundraising-st…
Read all about the amazing people raising money for us, and tell us about what you are doing.
#HSP #RareDisease #HereditarySpasticParaplegia #Fundraising #Charity