Area

Activity

Timeframe

Trustees

We would like more trustees. We are keen to hear from people interested to help the group grow and develop, and ensure we operate in line with our constitution. You would help the groups committees, make decisions on activities and finances, and take on tasks to move things forward. See further details at the bottom of this page.

It would be really good to have input from people with different ages and perspectives, and from different areas so we can best reflect all our member needs. You may have previously been a trustee, or this may be your first time.

Some 4-5 meetings a year, and agreed actions.

Treasurer

You would be responsible for the group’s finances and accounts, including budgeting and preparation of the annual accounts report. You would work with other trustees and committees as needed. You would receive and make payments, and arrange for the accounts to be audited. You would also need to be a trustee.

Some 4-5 trustee meetings a year, and agreed actions. Limited time input most weeks.

Secretary

You would manage the groups registration with Charity Commission and our membership of umbrella organisations, prepare the group’s annual report, take minutes at trustee meetings, receive and manage both member and research grant applications, and manage member notifications. You would also need to be a trustee.

Some 4-5 trustee meetings a year, and agreed actions. Limited time input most weeks.

Area

Activity

Timeframe

Website

You would become webmaster for the group’s website. You would undertake minor updates to the website as needed and help trustees and other stakeholders make amendments. You would be responsible for liaising with our host and resolving any issues, and ensuring that services remain up to date. You would be on our Website and Social Media committee.

Occasional input some months.

Database manager

You would be responsible for maintaining the group’s membership database. You would have appropriate MySQL skills and be able to resolve issues as they come up. You would be responsible for using the database to send emails to members, either nationally or within a radius of a meeting location. You would be on our membership committee.

Occasional input most months.

Social Media

You would post articles of interest on the groups social media platforms and engage with people contacting through these routes. You would also identify if the group should have a presence on other platforms and make proposals to the trustees. You would be on our website and social media committee.

Frequent short inputs

HSP news tracker

You would regularly review new stories, press releases and other channels to identify relevant news about HSP research, people with HSP in the news and other stories relevant to people with HSP. These stories would also feed into the newsletter. You would be on our website and social media committee.

Most months

Research database

We would like to have a new database of research into HSP, focussing on treatments. The database may also allow us to understand the work being carried out at different institutions around the world and identify key people. You would be on our research committee.

To be agreed

Area

Activity

Timeframe

Meetings Committee Chair

You would be the Chair of our meetings committee. You would liaise with the other meeting organisers and help them find information and resources as needed, by reference to our meetings organisers guide or via the experiences of other meeting organisers. You would organise meetings committee meetings as needed.

Occasional input most months.

Meetings

You would be the friendly face who organises meetings for members in new areas. You would arrange a suitable location for the meeting and decide on the content. You would be on our meetings committee, who would be able to provide support for this activity.

Arranging between 1 and 3 meetings for members a year.

Information sharing

You would coordinate with meeting organisers to help share information about topics that have been well received at meetings and help other meeting organisers to utilise these good ideas. You would be on our meetings committee.

Occasional input some months.

Area

Activity

Timeframe

General fundraising

We are always pleased when individuals take time to raise money for the group. This is always welcome, and we love hearing the stories behind the fundraising undertaken

Welcome at any time!

Fundraising support

You would help any individuals wishing to raise money for the group. You would provide them with information they may need to get set up, such as details of our justgiving and virginmoney fundraising portals. You would work with the treasurer to help receive money and thank them for their work. You would be on our fundraising committee.

Occasional input most months.

Fundraising – grants

You would be on our fundraising committee and help seek out organisations who we could apply to for funding. You would work in the team writing the applications and responding to queries.

Occasional input some months.

Fundraising – events

You would identify particular events which people could enter to raise sponsorship money for the group. You would arrange charity places at these events and identify volunteers to take part and promote these activities through our channels. You would be on our fundraising committee.

Occasional input some months.

Area

Activity

Timeframe

EuroHSP

You would represent the group on EuroHSP. They are seeking a board member to help run EuroHSP. You would participate in EuroHSP board meetings, and help EuroHSP to run whilst representing the UK group. You would regularly report back to trustees, seeking advice if necessary. This may involve occasional travel to meetings in Europe.

A few virtual meetings per year, plus actions agreed.

Meeting attendance

You would attend relevant and agreed rare disease, HSP and other types of meetings to both represent the group and to report back meeting content to members. You would also identify any people who we may want to talk at our meetings, and make contact with them. You would work with the research committee.

Attendance at specific meetings, usually in UK

Conference attendance

You would attend relevant and agreed medical conferences to both represent the group and to report back meeting content to members. You would seek to raise awareness of the group and potentially identify any people who we may want to talk at our meetings. You would work with the research committee.

Attendance at specific conferences, usually in UK

Stakeholder representation

You would represent the group as a stakeholder on consultations, for example NICE guidelines and other relevant papers/publications being consulted on. You would work with Trustees to agree the representation.

To be agreed

Charity Liaison

You would make contact with other relevant charities and identify how we could help each other – being the key point of contact between charities. This would include:

• charities of other conditions which are misdiagnosed for HSP,
• charities and other organisations who provide services or activities that members may wish to use
• relevant charities which can provide support in different ways e.g. carer support, loneliness etc.

You would be on our membership committee.

Input as needed during set-up of each relationship

Associations Liaison

You would make contact with other relevant associations, principally those whose members might treat those with HSP – for example the Association of British Neurologists. The aim of the liaison is to improve awareness of us, and also has the potential for us to know new stakeholders. You would be on our research committee.

Input as needed during set-up of each relationship

Lobbying

We are keen to investigate the potential for the group to lobby relevant political and healthcare groups. You would work with the trustees to agree which issues to lobby and we would need to agree a process for doing so.

To be agreed