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!
Wales area Zoom meeting report
20th June 2021
The Wales area Zoom meeting took place on Sunday 20th June. Even though only three members attended, we still had a lot to chat about.
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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
Wales area Zoom meeting report
9th May 2021
The Wales area Zoom meeting took place on Sunday 9th May at 3pm. 10 people were present for an informal chat about all things HSP.
Colchester Zoom meeting report
2nd May 2021
We held our first gathering on Zoom on Sunday, 2nd May. This initial get together was an experiment for those of us who regularly attend our usual face to face meetings at Feering Community Centre, near Colchester.
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 …
Midlands area Zoom meeting report
19th April 2021
We had a super Zoom chat at 3pm on Sunday 19th April 2021. No new members this time, but we enjoyed lots of discussion around a wide range of topics.
Milford Zoom meeting report
17th April 2021
We managed a Zoom meeting on the 17th April!!! Although booked in November 2020, the death of Prince Philip, determined our April meeting may not be possible, due to his funeral.
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.