Volunteer Stories – Harinder’s Story

Volunteers’ Week – It’s a chance to say thank you for the contribution millions of volunteers make across the UK and a great way to recognise and thank all our volunteers, for all the amazing things they’re doing to help us make a difference.

Harinder Kang, GREAT Project Employment Support Officer, based at VAL

Harinder works for the GREAT Project – the project helps individuals within families to move towards employment and training.

Since August 2014 I have been the Leicester Support Group PSPA Volunteer Coordinator. This has involved coordinating regular get togethers for families and individuals affected by the rare terminal neurological illness (Progressive Supranuclear Nuclear Palsy) to campaigning to raising awareness including with health professionals to supporting fundraising.

During the Covid-19 period, I have been supporting the Leicester Local PSPA Group through a What’s App Group formed in March 2020 and since November 2020, supporting at zoom meetings and on what’s App.

The support group makes a difference to local families affected by the illness. It helps reduces isolation and enables people to talk to others living and caring for others and gain support and share and learn about support available. It also provides a place of support and understanding post loss of a loved one.

Nigel Dempster the journalist, Dudley Moore the actor, Seb Coe the athletes mum were just a few well know individuals affected yet most medics /healthcare professionals have never heard of the illness and nor have the general public. There’s currently no cure.

It is hoped that if a science break through is made for PSP or Parkinsonism that it may also eventually lead to a cure for Alzheimers. So, small national charities like PSPA also make a significant contribution to seeking cures as well as creating Care Pathways for enabling good quality of life for those affected by these rare illnesses .

These are just a few of the reasons which have motivated me to be a volunteer to my local PSPA support group.