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
It is our 2022 AGM tomorrow morning, via Zoom. Looking forward to sharing our activities form the last year with our members!
AGM 2022 Voting underway
Our AGM is coming up on 16th July via Zoom to make it accessible to people who cannot travel. We’ve electronic voting in advance again this year. Members should check their e-mails for a link to vote. Please have your say in how we are run!
The Potato Pants Festival is back!
The 2022 Potato Pants festival is taking place on September 3rd at Cobham Sports and Social club on the outskirts of Wimborne. It’s a family friendly festival with activities and facilities to entertain the children.
Home affairs
On the run up to an announcement on the Wales Rare Disease Action Plan, journalist and HSP Support Group member, Phil Parry, discusses the issues faced by those with HSP in an article for The Eye.