18th May 2022
A lovely group zoom with seven people and everyone happy to introduce themselves. One person had very recently developed hearing difficulties and decided to leave. He said that he’d be very happy to be included in the next meeting.
On the run up to an announcement on the Wales Rare Disease Action Plan, journalist and HSP Support Group member, Phil Parry, discusses the issues faced by those with HSP in an article for The Eye.
10th April 2022
We met at Feering Community Centre, near Colchester in Essex on Sunday, 10th April for our first face-to-face meeting since October 2019. It was so good to meet in person again.
30th April 2022
The Hitchin Get together was held on the 30th April 2022 @ 13.30 @ the Orange Tree pub. It was the first face to face meet up since the pandemic began in 2020.
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.
