23rd April 2022
During the afternoon, I heard these words many times. Why? So good to see each other again. So good to be able to chat and share again. So good not to be the only one with a funny walk. This last comment was surprising, but confirms the benefits of meeting with others with the same disability.
9th April 2022
We would have loved to have had a face-to-face meeting here in Birmingham in April but the meetings are held in a Day Centre Facility and Covid restrictions still haven’t allowed us to return there as yet. We are hopeful for October.
Some of us will be online to Senedd, Holyrood and Westminster in a virtual reception (replacing the previous physical events). The British Rare Disease Strategy has already been produced and yet has to be ratified by the parliaments of Wales, Scotland and N Ireland.
26th January 2022
We have a separate meeting for these types of HSP because, although they are very similar to each other, they are very different, in some ways, from other types of Hereditary Spastic Paraplegia.
21st November 2021
Catching up with those who usually join us at Milford was a pleasure, plus welcoming a new couple.
Thursday 18th November 2021
The meetings committee have been wanting to get parents & carers of children, young people & dependant adults with hsp together for a long time.
11 November 2021
Although face to face meetings are held in Norwich and at Feering, near Colchester, in non-covid times, this zoom gathering was expanded to include the whole of East Anglia.
4 November 2021
You may wonder why we would have a separate meeting for these two types of HSP. It’s because, although they are very similar to each other, they are very different, in some ways, from other types of Hereditary Spastic Paraplegia.
31st October 2021
This was the third Zoom meeting we have held and we were pleased to see some new faces of all ages, some who watched and some who stayed for part.
Saturday 16th October 2021 – 2pm
Everyone welcomed. Only four people attended this time. We welcomed our newcomer and had lots to talk about including Botox, walking aids, FES and families with HSP.
