The HSP Support Group is a small charity run by dedicated, hardworking volunteers, most of whom are affected by HSP. It would not exist without the energy and passion of its members and those who go above and beyond to support those with HSP.
A group of Trustees provide the overall management of the group. They make decisions about how the groups funds should be spent to provide the best benefit to those with HSP, and they ensure the groups activities are carried out in a consistent way to support our members, remaining compliant with Charity Commission guidelines.
A number of committees have been set up within the group to organise and run the group’s activities. Each committee focuses on specific activities with the support of the Trustees in carrying out the important work of the group.
We are always on the look out for those with time and expertise to help our charity grow and develop. If you would like to help the group in any way get in touch with our Chairman to find out more. We are keen to hear from people who are interested in helping run the group’s activities, who are interested in becoming a Trustee or who have relevant experiences which they are willing to share with members. Please review the committee structure shown here and see where you could help.
Adam joined the Committee at our 2015 AGM and was elected as Chairman at our 2017 AGM. He has his own web site summarising his own journey with HSP here.
Dave was elected as Group Secretary in 2006 after being on the Committee for one year. His wife Carolyn has HSP. Dave sees his role very much as helping the organisation to progress.
I am a hospital doctor and trained GP. I got involved with the group as my partner has HSP and I would like to work towards increasing membership for the group and making others aware of the fantastic resources the group offers!
I had the pleasure of taking over as Treasurer following the 2023 AGM. My aim is to contribute to the great work the HSP Support Group does.
I am on the Genomic Medicine Advisory Group at Newcastle University. I am interested in sharing ideas about living with the condition and meeting with people. My background is as a senior manager in the NHS, having spent nine years at University studying Theoretical Physics, Computation and Researching Computing in a biomedical laboratory. I want to use this experience to further study the impact of HSP and treatments of its symptoms.
Emily is a LLB Law student at the University of Bristol. She was elected as a trustee at the 2022 AGM and wanted to get involved as her grandad has HSP.
Juan Vazquez Ruiz
I joined the group in 2021, following my daughter's diagnosis. The HSP Support Group is a wonderful platform to further research, as well as to guide and assist its members in their HSP journey. I look forward to contributing in any way I can.
You can find out more about being a Trustee of the group on our Trustee Application Form, which describes our expectation for trustees and the process for becoming one.
For meeting minutes visit our Minutes of Trustee meetings page.
You can also get in touch with our Trustees via our contact us page.