The Hereditary Spastic Paraplegia (HSP) Support Group is a small UK charity run by volunteers. It aims to provide support to those with HSP, their families and their carers. The group creates a friendly community allowing its members to feel less isolated and share their stories with each other.
The charity regularly runs local meetings across the country, with a larger AGM in July. They publish a newsletter 2-3 times a year and keep their website up to date (https://hspgroup.org/). They also have a private Facebook page, which can be accessed (https://www.facebook.com/hspgroup.org/), where members can discuss anything they want.
Members can apply for funding for mobility aids or other equipment to improve their quality of life. Members fundraise and the charity are proud of their annual Potato Pants Festival (http://potatopantsfestival.co.uk/). They also provide research grants to promote HSP research, part funding two UK PhDs this year.
The charity are striving to make themselves better known to relevant healthcare professionals, so that patients with HSP can be directed to them for support. They are there for the whole journey, not just the diagnosis, and would appreciate if healthcare professionals can:
- Advertise the group to patients/carers with HSP under your care and your colleagues
- Become honorary members of the group
- Help to identify guest speakers for their meetings
- Apply for small research grants which can be provided annually