We are seeking people to volunteer time to help run the group. Principally we are seeking people who are willing to become trustees of the charity and help run the group, however we would be interested in hearing from anyone who has time and enthusiasm to help us. Please drop me a line on adamhspsurvey@gmail.com to find out more information.
The text below sets out our expectations and highlights benefits you can get by working with the group. I have further specific details for the Secretary and Membership Secretary roles, who we are seeking to appoint from our 2020 AGM - thereby giving up to a year for handover.
Trustee Requirements
We expect trustees to have one or more of these characteristics:
• Have an interest in HSP
• Have an interest in running a charitable organisation
• Be kind, honest, diplomatic, considerate and engaging
• Enjoy developing ideas and concepts to help the group
• Take ownership of responsibilities and fulfil them
• Have special knowledge or experience of use to the group
Trustees meet approximately 3 times a year for face-to-face meetings. The trustees use reasonable skill and care to make decisions on the activities of the group, including meetings, the newsletter, fundraising and other activities. They similarly make financial decisions for the group, including grants for members and for researchers. All decisions need to be made in good faith to further the purposes of the group.
Trustees are expected to help the group’s committees carry out their day-to-day activities, and to report those activities to the other trustees. The committee involvement helps ensure that those people who help the group in this way are suitably supported and that the group’s activities are carried out consistently.
Trustees must also take note of the Charity Commission expectations of trustees.
Most communication between trustees is via e-mail although we are investigating using tele-conferences. The level of activity varies from week to week, ranging from nothing up to perhaps a few hours spread throughout the week. We would welcome people who could also take on other tasks to help the group.
Benefits
As a trustee you have opportunities to:
• shape and influence the direction of the group,
• shape and influence the direction of UK HSP research,
• attend events to gain knowledge useful to the group
• meet similar minded people and develop useful networks
• understand the wide range of needs for those affected by HSP
• ensure the group continues to provide the support needed by our members.
Specific Roles
In particular we are
seeking people to become Secretary and Membership Secretary. These are
important roles for the group, and these positions must be held by trustees.
Other Ways You Can Help
If you feel that being a trustee of the group is not for you, but you would like to help the group in a different way, then please let us know. We are always keen to hear from people who want to help, particularly if you could help with:
• organising local meetings,
• fundraising,
• running our website,
• giving information to members,
• networking with researchers or other charities,
• being a patient representative on research projects
• social media
• collating positive stories
