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
Overview of UK benefits
New YouTube vIdeo – overview of UK benefits
AGM Presentation – Olivia Rickmans work at Exeter (by Zoom)
On Weds 24th August at 7pm Andrew Crosby and Emma Baple will give us an overview of the work that Olivia Rickman did for her PhD via Zoom. We funded part of Olivia’s PhD at Exeter between 2016 and 2019. There should be time for some questions and answers afterwards. If you wish to attend please ask for details of …
AGM Presentation – Benefits Overview (by Zoom)
On Weds 10th August at 7pm Janet McBride will give us an overview of disability and other related benefits via Zoom. There should be time for some questions and answers afterwards. If you wish to attend please ask for details of the Zoom link.
2022 AGM on YouTube
Recording of 2022 AGM now on YouTube
Last day of voting
Last day of voting
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 group has reflected on the digital AGMs held during Coronavirus restrictions. Whilst many people who attend enjoy socialising, the key benefit of digital AGMs is that it opens up the AGM to all members with an internet connection. This makes the AGM accessible to a larger proportion of membership compared with those able to travel to a physical meeting …
YouTube: Falls with HSP
The second of our AGM presentations, Falling with HSP, presented by Coralie Seary is also available on our YouTube Channel.
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