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 below 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.
Ian has been Membership Secretary since 2004 and is passionate about helping others with HSP. Ian lives in Wimborne, Dorset and can be contacted at any time.
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.
John was elected as our Treasurer at the 2007 AGM and has been our "steady hand" at our finances since then.
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 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.