The first week of the 1000 mile challenge finished on Friday 16th July. We have got off to a really good start! Overall we have travelled 169 miles or 272 km. 10 members and the family of a former member have taken part, using seven different modes of transport. The distances The mode of transport with the greatest distance is …
1000 miles, Day 1
Day1: Members have got us off to a good start on our 1000 mile challenge – three were out on the first day! 7miles in manual wheelchairs and 31miles by bike. We’re almost at Newquay! #HSP1000 https://hspgroup.org/hsp-1000-mile-challenge/
2021 AGM on YouTube
Our AGM on Saturday 3rd July was a great success! – You can now watch this on our YouTube channel and catch up on the groups activities, see our awards and our #HSP1000 challenge! Thanks to everyone for taking part. https://www.youtube.com/watch?v=JGEET9D45rU #HSP #HereditarySpasticParaplegia #RareDisease
YouTube Channel Name
We have now passed 100 subscribers on our YouTube channel. This means we get to choose our own URL for the channel. https://www.youtube.com/c/UKHSPHereditarySpasticParaplegia The new name should make it easier for people to find us in searches, and remember who we are!
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Voting for AGM
This is our first year with postal and electronic voting for our AGM. We’re starting to get some votes in, and this is a reminder for members to check their e-mails and vote! AGM is 3rd July. Votes must be cast by 26th June. #HSP #HereditarySpasticParaplegia #RareDisease
On-line HSP meeting in Canada
There is a new HSP meeting being run in Canada on Sat 8th and Sun 9th of May. The meeting is being held on-line, and you may find something of interest. Registration for the meeting is CAD20 (~£11.65), and the meeting runs from 09:00-16:00 EST (16:00 – 21:00 BST). Funds raised are being used for HSP/PLS research The meeting is …