Email to Families from 22q Ireland

Dear families,

We are embarking on some exciting research with the School of Education Trinity College under the supervision of Prof Conor Mc Guckin.  We would like very much if there are any teachers, SNA’s, learning resource aides etc. interested in coming on board to help out with this (either in immediate families or in circle of friends).  Parents, you could also approach schools / teachers / principals with same request.

For anyone interested in getting involved with this project please contact Conor at and he will be happy to provide more information.

Also attached is a research paper which cites 22q prevalence as 1 in 992, a game-changer if ever there was one but there are a lot of things we can push for based on this. It makes for a very interesting read.

Best wishes,

Your 22q11 Ireland Committee


Email to Families

Dear all,

I am delighted to be able to send this email and thank Anne and the Committee for their very warm welcome to myself and the rest of the team that will be working on the various bits of the research programme.

Just like 22q, this will be a lifetime relationship and I am really looking forward to the journey.  We are assembling a team of world class researchers and educators who will be able to help us all on this journey. I am so very thankful for the time and energy that these individuals are offering to us.

I purposely used the word “us” at the end of the last paragraph. This research will be ongoing and will belong to you – the parents of children and young people with 22q, and those among us who have 22q.  In the words of a conference that we held in TCD very recently . . . “Nothing about us without us”.

Trust me when I say that this research is “about you” and “with you”.

Myself and the team that is being assembled to help us are very much of the same mindset – we have the research and educational skills to help us all over the next number of years – but we want you to be a full member of the research team.

Even if you are reading this and thinking that you don’t have research skills, trust me again when I say that you do. Research is very practical and we would love to see you putting your hand up to help along. Don’t worry about skills . . . or lack of them . . . That’s all ok . . . We’re in this together and we will get there together.  Even if you have a different skill set, bring them along – the more hands that we have helping along, the richer and better the research and outcomes for the 22q community in Ireland and beyond.

Every time I meet with Anne, I ask her about what her wishes are for the future. With these in mind, we will gather the research that we need to help Anne . . . and you . . . get to that future point.

I am also learning fast that each and every time I meet with Anne that my ‘to do’ list is getting longer!  That’s why I need your help.

I will get to meet some of you at the Annual Conference.  If I don’t get to meet you there, or if you won’t be there, drop me an email and we can at least catch up on phone.

If you want to call, my mobile number is:

087 1300177
I am also on FaceBook at:

Conor Mc Guckin (happy to accept Friend requests)
I am also on Twitter at:

And . . . my website is at:
As we progress with the research, I will update the 22q pages there and you can keep track of the various studies.  If there is a piece of research that you would like to help with, just shout.  As I always say, I might be a psychologist but I am not a mind reader 🙂

And, as I will not be able to coordinate all of this on my own, Anne will help along by being the expert consultant . . . I will be drawing heavily upon her knowledge!

Finally, I would like to briefly introduce my colleague who will be helping me to coordinate and manage the various bits of research.   Dr Aoife O’Brien is a world expert in the areas of bereavement and grief – especially among school age children and young people.  Aoife will introduce herself to you separately and I am so happy that she will be embarking on this voyage with us.

Until we meet, or chat on the phone . . . or Twitter or Facebook . . .,

Very best wishes to you and your family,

Conor 🙂