SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Applications For A New Trustee

Would you like to be on the committee of the Cystinosis Foundation UK ?

Our charity is now nearly 10 years old and during this time has run with a small committee of trustees who meet around 6 times a year, together with Jonathan Terry, our founder. We would now like to expand the committee by adding a new member to broaden the range of views considered, have another person to contribute different ideas and, of course, to add another set of hands to share the work we do.

So what is involved?

At the moment, we meet in the evenings including a phone conference. In the future, we have thought about trying to set up a PC based web conference. From each meeting there are a number of action points or activities which are allocated out by consensus, which means there is a varying amount of time required outside the meetings for each person.

What type of person are we looking for?

First and foremost, we are looking for someone who is passionate about the aims of the charity – Patient Support, Education and Research Support. Three out of the current trustees are fathers of a Cystinotic and brief details of all the trustees and the founder can be found on our Trustees page.

Secondly, we obviously need to find someone who can establish a good working relationship with the other trustees and is ready to share their own views, but is also flexible when listening to others’ views and ready to help build a consensus on actions or decisions.

Lastly but very importantly, as trustees we have an individual and collective legal responsibility for directing the affairs of the charity. Anyone who is interested should, therefore, fully understand this committment of “trust” – a good explanation of what a trustee needs to know is on the Charity Commission’s website.

How will we do this?

Before we add a new committee member, we will meet up so that both the committee and the candidate can establish whether both sides can effectively work together. We can also explain in more detail how the charity functions, including the governance and controls that safeguard its operations (like dual signatures on cheques). Hopefully, there will be more than one person interested and so we will then need to make a choice of which applicant we think will be the best addition to the committee.

What to do if you’re interested or have questions?

In the first instance please use the Contact Us page of this website to express your interest by 31 October 2008.

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