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. Being scattered throughout the UK, we understand that it’s difficult to get everyone together in one place, what with travelling etc, it can be a challenge for even the most organised of families. With this in mind, we decided, at very short notice, to arrange a zoom ‘family chat meeting’.
It was advertised about three days before on the hsp support group website and Hereditary spastic Paraplegia support for UK HSP’rs Facebook page plus sent to all members by the HSP Support Group e-mail facility. We were pleased to welcome four people to the family chat & there were eight others that expressed interest in joining the chat, but couldn’t make the November family chat because of work and other commitments.
One lady hadn’t met any other HSP’rs. It was her first time & appreciated the help, support and experience from other parents, plus sharing the experiences she had gained through her hsp journey. Many subjects were covered including wheelchair services, personalising wheelchairs etc, social clinics, FES, suitable cars/mobility equipment, hsp clinics/consultants, plus obtaining the referrals/medical help needed.
All felt the meeting had been successful and were keen to meet again in December. It was agreed that an evening would be best. So, we’ve arranged to hold the next family chat on Wednesday 8th December & 8pm.
We hope to welcome you to the next one. 😊
Della Brookman.
Comments 1
Hello
I have just been diagnosed with HSP by genetic testing in August. I am so sure I will find anything like this very interesting, with having a chest infection and bronchitis found it hard to join recent ones but I believe there is a zoom meeting in January which I intend to join.
Jane Matthews