CHECT is currently looking to recruit a parent of a child who has had retinoblastoma (Rb) as a lay representative to our Scientific Advisory Committee (SAC).
The main responsibility of the SAC is to oversee CHECT’s research activities: assessing applications to our annual funding round and monitoring the performance of CHECT-funded projects.
The committee consists of several medical professionals who are closely involved in cancer treatment/care, ophthalmology, epidemiology, genetics, laboratory research and psycho-social studies; as well as a CHECT trustee.
You
To add to this existing expertise, we would like one or two parents who are members of CHECT to join the group who bring personal, but non-professional, experience of Rb. We already have one lay member who brings experience of having had Rb as a child, and we would like to add lay members who are parents of a child with Rb. You do not need to have any prior medical knowledge or experience – in fact we would prefer you not to! The inclusion in the SAC of an individual with personal experience of Rb will help us to ensure CHECT continues to fund research questions relevant to the lives and needs of those directly affected by retinoblastoma.
Time commitment
The SAC meets remotely every six months (usually September and January) on a weekday during office hours (meetings last 1 – 1.5 hours). Occasionally we may have one additional evening conference call. There will be papers to read before each meeting which will take from 30 mins to one hour. Your input is important, so if you are unable to join a meeting, we ask that you let us know and send us your comments / feedback in advance. A term of office is three years, and only two terms can be served consecutively.
A current parent rep said: “I’ve really enjoyed being part of this group, a fascinating experience. I definitely feel that my confidence has grown in just being responsible for the parent input rather than trying to understand the science and I’m grateful that my lay person input has always been valued.”
You can find out more about CHECT research at www.chect.org.uk/research, and if you would have any questions about the role, contact Petra Maxwell at petra.maxwell@chect.org.uk or on 020 7377 5578.
We are asking CHECT members only to express their interest to Petra via this form, with a few details about your personal experience of retinoblastoma and why you are interested in the role, by 1 November 2025. Petra will then contact you for an informal chat so that we can find out a bit more about you, explain more about the role and give you the opportunity to ask any questions you have.