Benefits of joining the HSP Support Group
The HSP Support Group is made up of people just like you. We face living with Hereditary Spastic Paraplegia (HSP), whether it is through a personal diagnosis, as a partner, a parent, a sibling or a carer of someone living with the condition. We are a friendly group, and although the condition is varied, it is likely that there’s someone you can talk to who has had similar experiences to you.
Whether you are searching for information on a diagnosis, or have a long-term acquaintance with HSP, the HSP Support Group can offer support and practical help in a number of ways, including:
HSP is a rare disease, so you are unlikely to bump into a fellow HSP’er down the local supermarket. We arrange local meetings which are a great way to meet new people and tap into other people’s experiences – especially when it comes to local services and recommendations for the best specialists. Many local meetings invite a speaker to attend and also allow you time to chat with other HSP’ers in a friendly and informal atmosphere.
Not only do the local meetings let you learn something new, they offer a valuable opportunity to connect with others who truly understand what it is like to live with HSP and who are happy to share their experiences. Meetings are held regularly across the country in wheelchair accessible venues.
Find out more about local meetings
The key to finding a cure and developing effective treatments for the effects of HSP on daily life is through research. To this end the HSP Support Group has good relationships with researchers in the UK and supports professional research projects with cash grants. We have provided grants to teams researching many aspects of the condition and we regularly report on progress made on these topics to our members.
Additionally, those who undertake research are often looking for people with HSP to take part in trials and other research projects. Over the years our group has provided willing members to take part in different types of projects in various parts of the country.
Find out more about research grants
Annual General Meeting
Each year the HSP Support Group’s AGM offers the chance to listen to renowned speakers and experts in all aspects of HSP and to members sharing their experiences. Topics include the latest medical advances and treatments and practical advice to help you live with the condition. At the same time, members also make decisions on how the charity is run. The AGM is an excellent time for members across the country to come together, and is just as much a social event as it is professional, with friends old and new welcome to attend.
Find out more about the HSP Support Group AGM
Grants for members
Grants of up to £750 are available to members to assist in increasing their mobility by helping to finance things like scooters, wheelchairs and other mobility aids. Members need to have been in membership for a minimum of 1 year before applying.
Find out more about grants for members
Members can join our Facebook Group to ask questions and share information and experiences with many others with HSP.
Join the Facebook Group
Keep up-to-date with the very latest from the HSP Support Group and the HSP community with our regular Newslink newsletters, published 2-3 times a year. You can also look back over past issues.
Check out our Newslink newsletters
Members can sign up to our e-mail discussion group system, which allows members to ask questions to other members, who share their information and experiences to help you.
Use our contact form to join the discussion group