The XLP Research Trust is entering exciting times as we grow and with that
come new challenges. To continue the evolution of the charity we need help in a
number of areas outlined below. All of the volunteer posts are non salaried but
reasonable expenses will be paid in taking on these important roles. So if you
think that you could spare some time then please contact us at the office –
either by telephone or email.
Advisers/trustees We’ve identified a key role that would help compliment the existing
trustee team. You could take on one of these positions either on an advisor role
or join the trustees. We meet 3 to 4 times a year. We are looking for:-
Solicitor/legal advice.
This would be to help work on primarily the contracts we are putting in place
with the various research institutes we are now funding. Knowledge of UK
contract law is essential.
Medical advisors In 2008 we will be putting in place an ‘Internal Medical Review Panel’
who will review approaches to the charity for research funding. If you are an
experienced medical professional (GP, specialist nurse, consultant, doctor etc.)
with an active interest in genetics then we would be keen to hear from you. You
could be based any where in the world as we can arrange ‘virtual’ meetings
of this important advisor board that will meet twice a year.
Fundraising There are lots of potential areas here that we require help in.
Trust Fund Applications Now as a charity we have completed our first round of grants we would like
to explore applying to some of the many trusts and foundations that exist. You
should have a keen business eye, be able to communicate well and be both
creative and enthusiastic! You could be based anywhere in the UK for this role.
Romsey & Test Valley Fundraising Group Allison runs a successful local fundraising group that come up with some
innovative events around our home town. If you would like to join this team then
please let us know.
Cameron Twitty
The following stories are about Cameron Twitty his diagnosis was a mystery
until just before Christmas 2006 when, aged 12, doctors determined that...