Birmingham Pre-Christmas Lunch

Christmas

26 November 2022
It was great to have 16 people meet up at the Packhorse Pub on Saturday 26th November for a pre-Christmas Lunch and was really lovely to welcome four new members plus partners/friends.

HSP Patient Journey

News

People may be interested to know that the European Reference Network have just published a ‘patient journey’ for people with HSP. Each row on the journey describes a different aspect of HSP. Headlines give details about HSP, and cover what may happen in clinic. The journey also gives some of the challenges faced by people with HSP, and some aspirational …

Childhood Onset HSP Survey

News

Two mothers of children with HSP, one from the UK the other from the US, have teamed up. They seek to gather data that might help researchers and clinicians working on treatments. They can also connect families with the same HSP types or variants, and aspire to create a global community of HSP parents. Their survey has been open for …

Scotland Zoom Meeting Report

22nd October 2022
The meeting went ahead despite the muddle of Meta Rejigging of Facebook, and several zoomed including some new. We spent a lot of time talking about rollators, bikes and other rural mobility aids that could cope with tough surfaces as well as what adjustments Motorbility might make.

London Marathon

Estelle is running the #LondonMarathon for us this weekend.

2

Group Social – 8th October

News

We are pleased to announce our first group social meeting, on Saturday 8th October 2022 in Birmingham. Members should find further details of the day in their e-mails. We need members to confirm attendance by 26th Sept so that we can ensure appropriate catering. The main objective of the day is for socialising with other members. However, there are also …

The molecular basis of HSP

New video on our YouTube channel – Andrew Crosby and Emma Baple tell the group about the work their team has been doing in Exeter, including new types of HSP, partly funded by the group. This video was recorded on Weds 24th August 2022. https://www.youtube.com/watch?v=Mfk6qap2ric #HSP #RareDisease #HereditarySpasticParaplegia

AGM Tomorrow

AGM Welcome

It is our 2022 AGM tomorrow morning, via Zoom. Looking forward to sharing our activities form the last year with our members!