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Reaching outside the group

Lee Reavey, Co-Founder and Trustee of the NCBRS Worldwide shares their journey to open recruitment




“My boy was born in 2007 and diagnosed with Nicolaides-Baraitser syndrome. He was the second person ever to be diagnosed and there was very little information available. I remember walking out of Great Ormond Street Hospital, feeling all alone.


In 2010 I set up a Facebook group. I was motivated not to let other families go through that and be as isolated. In 2020 our small group officially became a charity. We did it all ourselves; we set the policies up and did all the paperwork.


The board was made up of all parents. When the old chair of trustees stepped down, we came to the realisation that we needed to go outside of that group to grow the board and meet the challenges we have as an organisation. We need more research into the condition: how to live with it, how best to support children who have it. There was no research at all, just one small paper that had been written. We also were looking at the strategy around how funding for the charity would take place. Also, we’re an international foundation supporting families worldwide and needed to reflect that on the board.


We wanted to have a more diverse board, in terms of gender, age, people of colour - and particularly younger trustees.


I heard about the Transform programme through Beacon. We’d never done open recruitment before.


Going on the programme was absolutely brilliant, we didn’t have any process in place before that. I don’t think we would have had the applications we did if we hadn’t been through Transform.

There were other rare diseases charities in the cohort and we drew on each other’s experiences, shared adverts, and gave each other advice. I took 20 pages of notes on how to recruit!


We did a skills audit of what we needed on the board and worked out we needed charity governance, medical research, marketing and campaigning, fundraising and grant application skills. We were looking to recruit between 2-3 new trustees.



We put everything into our trustee information pack. Our trustee information is 10-12 pages long and has pictures of people affected by the condition, experiences, what we need from trustees and the requirements of the role. You’ve got to be open and honest. We were very clear about time commitment and also accommodating to carers. We put everything into it to see if applicants have that passion once they know what the role is.


We had an online application google form which helped with accessibility. Sixteen applications came through that way so I think that made a big difference.


If it wasn’t for Beacon and Getting on Board I don’t think we would have got one application outside of parents of children with the conditions. We’ve got a new chair and all the other trustees are non–parents. It’s had a huge impact; it’s been astronomical.”


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