Want to be able to help the group?

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The group is always looking for help. There are a number of areas listed below where we could do with some help. If you can help or would like further information please get in touch. We are happy to receive offers of help from anyone, you do not have to be a member of the group.

We will consider all offers of help made, and we would discuss the details with you to reach an agreement that both you and us are happy with. Some areas may require more than one person to fulfil, and we are happy for people to work together to get any of these moved forward.


Charity Management


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.

Some 3 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 3 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 3 meetings a year, and agreed actions. Limited time input most weeks.


Technology and News


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


Meetings


Area

Activity

Timeframe

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 a year.

Virtual Meetings

You would be the friendly face who organises Zoom meetings for members. You would decide on the content. You would be on our meetings committee, who would be able to provide support for this. You may also provide support to other meeting organisers to help them arrange digital meetings in their areas.

To be agreed – likely arranging between 2 and 6 meetings 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.


Fundraising


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.


Liaison and Representation


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


Member Support


Area

Activity

Timeframe

Support line

You would be available to answer telephone calls from members and the public and provide them with information about HSP or signpost them to other places where they can get the assistance they are looking for. You would be on our membership committee.

Occasional input potentially most months

Members with Complex HSP

We are keen to ensure that our support helps all members. We acknowledge that people with complex HSP often have a more difficult journey and there is potential for mismatch between what we currently offer and what these members may need. We are keen to develop ideas to provide support. You would work with Trustees and be on our membership committee.

Happy to discuss ideas and agree inputs.

Younger members

We are keen to ensure that our support helps all members. We acknowledge that our younger may have different requirements of the support group than our older members. We are keen to develop ideas to provide support. You would work with Trustees and be on our membership committee.

Happy to discuss ideas and agree inputs.

Members who have to care for someone with HSP

We are keen to ensure that our support helps all members. We acknowledge there is potential mismatch between what we currently offer and what is needed by those who have to care for someone with HSP. We are keen to develop ideas to provide support. You would work with Trustees and be on our membership committee.

Happy to discuss ideas and agree inputs.

Members who have HSP and caring responsibilities

We are keen to ensure that our support helps all members. We acknowledge there is potential mismatch between what we currently offer and what is needed by those who have HSP and also have caring responsibilities. We are keen to develop ideas to provide support. You would work with Trustees and be on our membership committee.

Happy to discuss ideas and agree inputs.

Members without access to the internet

We are keen to ensure that our support helps all members. We acknowledge that many sources of support are now available on-line, which puts members without access to the internet at a disadvantage. We are keen to develop ideas to provide support. You would work with Trustees and be on our membership committee.

Happy to discuss ideas and agree inputs.

New Activities

We are keen to consider organising away days or activities which members could take part in. You would work with trustees to agree activities, and then plan and organise these so we can offer them to members. You would be on our membership committee.

To be agreed


Research


Area

Activity

Timeframe

Research publications tracker

You would regularly review published abstracts to identify new HSP research findings. You would liaise with authors of papers and seek copies to build a library of useful resources for members. You would be on our research committee.

Most months

Patient Participation

You would work on research projects to provide patient involvement at the organisational level of the research projects. You would agree with the researchers your scope and establish if you would receive payment for that work, which you would be entitled to keep. You would be on our research committee.

To be agreed

Liaison with research teams

You would keep in touch regularly with agreed research teams to understand the work that they are doing and report key news to members. You would be on our research committee.

Occasional input 1 or 2 times a year


The Trustee Role

We are keen to hear from people interested in volunteering their time to help the group grow and develop, becoming trustees and ensuring the group operates in line with its constitution.

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 or on-line video 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 or video call. The level of activity varies from week to week, ranging from nothing up to perhaps a few hours spread throughout the week.

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.

Application Process

Please talk to one of the other trustees if you wish to find out more information. There is an Trustee Application Form  on our website which you should complete and then send to our secretary.

Anyone is welcome to attend a trustee meeting before making a commitment to become a trustee. After election at an AGM trustees serve for a three year period, but this is reviewed on a year-by-year basis.