This post is a copy of most the letter sent from our Chair to members at the end of June about our 2025 AGM, which is on Sunday 27th July starting at 10:30 in Selly Oak, Birmingham. If members have not received this information, please get in touch with us so we can send you the information and relevant links. …
AGM Update
Voting Information Voting has been open for about a week for our face-to-face in person AGM on 27th July, in Birmingham. Members have received an e-mail telling them how to: Around 7% of membership have responded so far, and we thank you for your responses. We’d love to hear from more of you. Some people have registered their attendance at …
May monthly meeting with Estelle
May 2025
Eight people joined the May monthly meeting with Estelle. This session is one of our regular, informal, Zoom meetings held on the third Tuesday of each month.
Birmingham Get-Together Report
12 April 2025A beautiful sunny day in Birmingham, brought 20 of us together (including 3 new people) for our 20th get-together. There were 4 apologies due to illness.
Milford Afternoon Tea
5 April 2025
With such glorious weather we were delighted to welcome twenty people to our meeting, including some new faces.
Colchester Branch Meeting Report
23 March 2025
We met at Feering, near Colchester in Essex on 23rd March 2025 for our Spring meeting. There were 16 of us from across the region, chatting over tea, coffee and biscuits and listening to our speaker, Bob Barnett, who came from REMAP Essex North to talk about the work REMAP volunteers do for people with disabilities.
Medway Neurological Network – Rare Disease Day
21st February 2025
The Medway Neurological Network organised a get together for Rare Disease Day, Friday 28th February, a week early on Friday 21st February.
Birmingham meeting report
1 February 2025
After a very cold, stormy, wet January, it was so nice for the Birmingham Group to meet up for a pub lunch at The Red Lion at Earlswood.
AGM presentations on YouTube
All our 2024 AGM presentations are now on our YouTube channel -why not pop over and watch?https://www.youtube.com/@ukhsp-spasticparaplegia #HSP #HereditarySpasticParaplegia #RareDisease Harini Jeyakumar presented her study into the Epidemiology of HSP in England and Northern Ireland, focussing on mental health outcomes. She completed for her dissertation in her Masters of Public Health degree. – https://www.youtube.com/watch?v=ARMtXWg0EOE Estelle Marshall presented her study of …
Feering, Colchester Meeting Report
20th October 2024
We met, as usual, at Feering Community Centre on a Sunday afternoon. As we arrived, Superman and a Disney Princess also arrived to surprise the guests at a four year old’s birthday party in the larger hall! Sadly, they didn’t join us!