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!
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 …
New HSP Research Award
There is a new award for HSP researchers, being funded by EuroHSP, the Adolf Strümpell Prize with a value of 2,500 Euro. It is a best paper award to recognise research achievements in therapy/treatment for HSP.
Potato Pants Mini-fest On-line
The Potato Pants mini-fest on Easter Sunday was a great success, and has now raised (with gift aid) just over £1000 for the group.
Potato Pants On-line Mini-fest!
A few of the potato pants musical regulars will be performing a live on-line set for the HSP Support Group on Easter Sunday between 16:00 and 18:30. Amie Knight, Matt Griffiths, Mikey Ball and Matt Black are extremely talented Dorset musicians who have donated their time to us. The event will be free of charge to watch, but we would …