This is not an exhaustive list of links. Rather, it is list that I am updating as I go – adding useful links that I think might be of use to you.
GEMSS – Genetics Education Materials for School Success
GEMSS has lots of useful information – even downloads that can be given to teachers. GEMSS was developed by the Education & Outreach work group, within the New England Genetics Collaborative (NEGC) – a group of specialists from the six New England states (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont).
References from Ireland
Alugo, T., Malone, H., Sheehan, A., Coyne, I., & Mc Nicholas, F., et al. (under review). Development of a 22q11.2 Deletion Syndrome psycho-education parenting programme: Exploration of the views, concerns and educational needs of parents caring for children or adolescents with 22q11 deletion syndrome in relation to mental health issues.
Bartlett, M. J., O’Brien, A. M., Welch, E. M., & Mc Guckin, C. (in press). 22q11.2 Deletion Syndrome: What’s that then? A psycho-educational view of rare diseases. Trinity Education Papers. Dublin, Ireland: School of Education, Trinity College Dublin. (ISSN: 2009-6003 [Print], 2009-6496 [Online]).
Doyle, K. C., & Mc Guckin, C. (in preparation). 22q11.2 Deletion Syndrome: Role in psychology. Irish Psychology.
Lawlor, A. (2009). A needs analysis of the 22q Ireland support group. (Unpublished thesis). Dublin, IRL: All Hallows College, submitted to Dublin City University.
Kerin, L. (2015). Briefing paper on the mental health needs of children and adolescents with 22q11 deletion syndrome in Ireland.
Mc Guckin, C. (Ed.), (in preparation). 22q11.2 Deletion Syndrome through the lifespan. London, UK: Peter Lang Publishers.
Mc Guckin, C., (2015). National landmark 22q11.2 Deletion Syndrome longitudinal research. Conference: 22q Ireland Annual Conference 2015, At Clarion Hotel – Liffey Valley, Liffey Valley, Dublin, County Dublin, Ireland.
Mc Guckin, C. (2016). The 22q11.2 Deletion Syndrome National Landmark Longitudinal Study. Keynote presentation to the Northern Ireland Branch of the British Psychological Society (NIBPS) One Day Conference 2016: A Flavour of Psychology, 5th October, 2016, The Whitla Hall, Queen’s University Belfast, Belfast, County Down, Northern Ireland.
Mc Guckin, C., Bartlett, M. J., & O’Brien, A. M. (under review). Raising our voice for the education of students with rare diseases: The interesting challenge of 22q11.2 Deletion Syndrome. International Journal of Student Voice.
Mc Guckin, C., Doyle, K. C., Corcoran, L., O’Brien, A., Carr-Fanning, K., & Lawlor, A. (2016). 22q: What’s that then? Educational inclusion for pupils with rare disease. The British Psychological Society (Northern Ireland Branch) Sixtieth Anniversary Annual Conference: “Legacies and Futures”. The Ballymascanlon House Hotel, Dundalk, Co. Louth, Ireland, 3rd – 5th March, 2016.
Mc Guckin, C., Welch, E. M., Bartlett, M. J., & O’Brien, A. M. (2015). Bubbleskool: A ‘creative and imaginative’ approach to aiding the education children with rare diseases. The Psychological Society of Ireland Annual Conference, The Galway Radisson Blu Hotel & Spa, Galway, Ireland, 11th-14th November, 2015. The Irish Psychologist, 42(1), S25. (ISSN: 0790 – 4789).
Mc Guckin, C., Bartlett, M. J., Welch, E. M., O’Brien, A. M., & Lawlor, A. (2015). 22q: What’s that then? A psycho-educational view of rare diseases. The Psychological Society of Ireland Annual Conference, The Galway Radisson Blu Hotel & Spa, Galway, Ireland, 11th-14th November, 2015. The Irish Psychologist, 42(1), S25. (ISSN: 0790 – 4789).
Murphy. K., Garavan, H., McDonald, C., & O’Hanlon, E. (2015). Mental Health, Behaviour and Neuropsychological Profile of velo-cardio-facial Syndrome. RCSI Dublin, IRL: Beaumont Hospital Education and Research Centre.
Murphy. K., Garavan, H., McDonald, C., & O’Hanlon, E. (2015). RCSI Structural and functional neuroimaging in people with velo-cardio-facial Syndrome. An fMRI follow up study connected to Mental Health, Behaviour and Neuropsychological Profile of velo-cardio-facial-syndrome. Department of Medical Genetics OLHSC and Department of Psychiatry, RCSI Dublin, IRL: Beaumont Hospital Education and Research Centre.
Nicholl, H., Doyle, C., Begley, T., Murphy, M., Lawlor, L., & Malone, H. (2014). Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professional during healthcare encounters. Journal for Specialists in Pediatric Nursing, 19 (3), pp238.
O’Brien, A. M., Mc Guckin, C., Harmon, A., Adams, P., & Doyle, K. C. (2016). Bubbleskool: A useful assistive technology for pupils with rare disease? The British Psychological Society (Northern Ireland Branch) Sixtieth Anniversary Annual Conference: “Legacies and Futures”, The Ballymascanlon House Hotel, Dundalk, Co. Louth, Ireland, 3rd – 5th March, 2016.
O’Hanlon, E., (under review). Multimodal MRI reveals structural connectivity difference related to impaired spatial working memory in both 22q11.2 deletion syndrome and schizophrenia.
Reilly, C. (2012). Behavioural phenotypes and special educational needs:
is aetiology important in the classroom? Journal of Intellectual Disability Research, 56 (10), 929 – 946. doi: 10.1111/j.1365-2788.2012.01542.x
Reilly, C. (2013). An examination of parents and teachers’ views on educational provision and educational achievement for children with velo-cardio-facial syndrome. VCFS conference presentation. 18th June 2013
Reilly, C., (year). Psychosocial functioning and parent support needs in Velo-cardio-facial-syndrome. (Poster presentation). (place)?
Reilly, C., Murtagh, L., & Senior J. (2015). Behavioural phenotypes in the classroom: a qualitative study of parental and teacher knowledge of classroom guidelines and teacher views on best practices. Journal of Research in Special Education Needs.
Reilly, C., Murtagh, L., & Senior J. (2015). ASD, ADHD, mental health conditions and psychopharmacology in neurogenetic syndromes: parent survey. Journal of Intellectual Disability, 59 (4), 307-318. doi: 10.1111/jir.12147
Reilly, C., & Lawlor, A. (2014). The Educational Needs of Children with 22q Deletion (22qDel) Syndrome. REACH Journal of Special Needs Education in Ireland, 27(2), 103 -112.
Reilly, C., Stedman, L. (2013). Supporting children with genetic syndromes in the classroom: the example of 22q deletion syndrome. British Journal of Learning Support, 28 (3) 115 – 121. doi: 10.1111/1467-9604.12029
O’Síoráin, C-A., Prendergast, M., O’Brien, A. M., & Mc Guckin, C. (2015). 22q11.2 Deletion Syndrome and mathematics: Definitely not there yet (Q.E.D.)! The Fourth Children’s Research Network for Ireland and Northern Ireland Conference 2015: Better Outcomes for Children: Are we there yet?, Chartered Accountants House, Dublin, County Dublin, Ireland, 10th December, 2015.
Sweeney, T., McGillivary, A., & Flood. L. (year). Parent perception of needs of children with 22q11 Deletion Syndrome living in Ireland.
Teng, J., Crotty, F., Lawlor. A., & Rowland. M. (2013). A Report on the 20th International scientific meeting of the velo-cardio-facial syndrome education foundation, (SSRA in conjunction with UCD). Dublin, Ireland, July, 2013.