WHERE WE ARE NOW
The impact that our charity has had on the Irish 22q community is phenomenal. When we began in 2007 with just 3 families very little was known about 22qDS in Ireland. Now we have a 150 families nationwide who are so much more clued-in about their children’s needs. Our parents are helping to educate doctors, dentists, consultants, nurses, therapists, teachers, social workers and a host of other professionals about 22qDS. We connect, learn and share our most valuable resource –ourselves, and the kind of knowledge that can only come from the felt-lived-experience of loving and caring for a child with 22q.
As parents we are aware that our children grow up and not ‘out of’ this condition. We know that adulthood brings as many challenges that childhood does. Just recently our young adults have become involved in research and we were thrilled that they presented at the European 22q11 Alliance meeting(hosted by us) in Dublin 2017. We see them as a valuable resource and are enormously proud of them. Internationally our Irish group is respected and recognised for our considerable achievements over the 10+ years we have been in operation.
We are involved in Irish based research projects with Trinity College Medical Genetics and we are collaborating with Trinity College School of Education.
With the help of our independent mental health researcher Lorna Kerin, 22q11 Ireland applied for and received two Irish Research Council grants. This has resulted in research projects with UCD Child and Adolescent psychiatry. Building on the success of these we are currently in the process of proposing two more projects in collaboration with UCD. And finally, we are also involved in a research project with a PhD student in UCC.
In 2017, 22q11 received a GSK Ireland Impact Award and the Small Organisations Community Impact Award.
Our Chair Anne Lawlor received the 2017 Rare Champion of Hope award for International Advocacy.
We are also currently engaging with clinicians in a bid to develop a care pathway for 22q as to date we have no care-coordinator and no clinic.
We are wholly voluntary and our parents regularly organise events to raise funds and awareness. The 22q11 Ireland Support Group may be small but we are MASSIVE!
WHO WE ARE
The 22q11 Ireland Support Group was set up to provide help, support and accurate information to Irish families. 22q11 Deletion syndrome is a complex variable condition with over 180 different symptoms caused by a micro-deletion on the 22nd chromosome. No two persons with 22qDS will have exactly the same symptoms and some individuals will develop newer ones over time. On average, individuals could experience between 20 – 30 symptoms over their lifetime. Our children are heroes. They are born with a chromosomal disorder that not too many people know about (including us!) which means that basically they grow up in a world surrounded by adults who do not understand them. Apart from their many medical problems, the neuro-cognitive profile of 22q is not very well recognised and this lack of awareness can and does cause distress both to the children themselves and those involved in their care.
Common 22q symptoms include heart defects, immune issues, palate and feeding problems, speech and language delays, learning difficulties and emotional, behavioural and social issues. A proportion of children born with 22q DS are on the autism spectrum and some will develop psychiatric problems. Most children struggle in school and anxiety is a huge problem.
As parents therefore it is crucial that we have accurate information on 22q so that we can help give our children the best chance to reach their potential in life. Although we have some excellent professionals here in Ireland specific “syndrome knowledge” of 22q is very limited. We source the very best International expertise on 22q DS and bring the relevant specialists here to give us the most accurate information and up-to-date research which in turn ensures that we have the knowledge we need to better the quality of our lives and that of our children. For us knowledge is power, without it our children can and do suffer needlessly and what hurts them hurts us. Our annual conferences and family get-togethers are very important days, they help enormously towards lessening the isolation that so many of us feel when faced with the challenges that living with 22q can bring.