The theme will be THE PANCH TATVAS or the 5 truths or beliefs
The John Langdon Down Foundation in Mexico, organized the First Down Syndrome World Congress in November 11. 12 & 13 in 1981 with 26 countries attending .
It was such a success that the John Langdon Down Foundation in Mexico organized the Second Down Syndrome Congress one year and a half later, on March 16, 17 & 18th. 1983 in Mexico City as well, with the participation of the most distinguished researchers on Down Syndrome, among them Prof. Jeróme Lejeune, Sig Pueschel; Joe Berg, George Smith and many others.
People from all Latin American Countries as well as many countries in Europe and Asia attended (29 countries).
During the 2nd. World Down Syndrome Congress, Dr. Brian Stratford whom also participate, wanted to organize the Third International Down Syndrome Congress and it was held 10. 12, & 12th. April 1986 in Brighton, England.
The 4th was held in Israel, as you know and the 5th Orlando, Florida.
Dr. Surekha Ramachandran has been a visionary as far as DS in India is concerned. When Babli Ramachandran, her daughter was diagnosed as a person with DS, she refused to cow down before doctors who gave Babli no hope. Inspired by her struggles, she decided to help more parents like her and more children like Babli to lead as near-normal lives as possible.
Way back in the 1980’s, there were no specific centers for those suffering from Down syndrome. These people were just grouped with the intellectually challenged and cerebral palsied in special schools for education and rehabilitation. Experts in this field were limited, guidance and counseling was sparingly available, and topping it all, parents with such children did not come out to share their experiences. Help and intervention from abroad, obviously could not be afforded by one and all, and by the time help was actually got, the opportunity to develop the child to the best of his or her potential was lost. It was under such circumstances that Dr. Ramachandran, decided to help others like herself and Babli and created Down Syndrome Federation of India, a place where all the help, as in, the guidance of specialists, allied health professionals and therapists were brought under one single roof.
Dr. Surekha Ramachandran is very passionate about Down Syndrome and the importance of early intervention for people with DS. She has been a trustee of Down Syndrome International from its inception and has been contributing to the awareness of DS in India and the globe through various lectures and books.
Dr. Surekha Ramachandran holds a Ph.D in Cognitive Deficits and Depression in Down Syndrome at University of Madras. Having travelled all over the world, Dr. Ramachandran has kept herself abreast of the developments in the dynamically changing scene of Down Syndrome.
Dr. Ramachandran has inspired many families to cope up with Down syndrome, with love and care. She has always emphasized the need for inclusive living for these individuals with Down syndrome.
She has written two books - “With love from Babli - A child with Down's Syndrome - (A Referral Guide) and Life starts at Sixteen - Down's Syndrome”. Both these books are an inspiration for parents and people who deal with Down syndrome. They are a simple insight into ways of making people with DS feel as much a part of society as anybody else.
These books are also a part of many curricula for studies on Down Syndrome.
The DSi elects its President for a term of three years. The handing over happens at the World Down Syndrome Congress. It is a matter of honor that Dr. Ramachandran has been elected as the next President of DSi and she will hold office for the period 2015-2018.
As the President of such a prestigious body, Dr. Ramachandran has a lot of programs in her agenda. The main objective is to spread awareness about this condition in the developing nations. India, other SAARC countries and the Middle East – still incorrectly group DS under the umbrella of Mental Retardation. Her goal is to try and spread the message that DS is a genetic medical condition in which the person can come into inclusive living with early intervention and care. Making India a more aware country and getting inclusivity for people with DS is the main challenge that she intends to tackle as she takes charge.
Dr. Capone is the Director of the Down Syndrome Clinic and Research Center at Kennedy Krieger Institute. He is an Associate Professor of Pediatrics at John Hopkins School of Medicine and conducts collaborative and ongoing research in the areas of neuroimaging, neurobehavioral phenotypes, mood disorders, sleep disorders, pharmacologic management and clinical trials. He serves on the Board of Directors of the National DS Congress, the Clinical & Scientific Advisory Boards of the National DS Society, the NIH-NICHD DS Consortium, and is a member and a founding Director of the Down Syndrome Medical Interest Group-USA Inc.
A graduate of Wesleyan College and University of Connecticut Medical School, Dr. Capone completed his residency and fellowship at Cincinnati Children’s Hospital and another fellowship at
John Hopkins University School of Medicine. He lives in Maryland with his wife Mary, son Daniel, and Maggie their Australian Shepard. His daughter, Lauren, lives in California.
General and interventional cardiology, coronary artery disease, heart failure and pulmonary hypertension
University College Dublin 1977 – 1983, Mater Miseracordiae Hospital 1980 – 1983
Brunel University 1990 – 1992, INSEAD Fountainbleu 2003
MB. BCh. BAO. UCD 1983, MRCPI (Dublin) 1985 MD (NUI) 1994, FRCP (RCP) 2001 Molloy prize chemistry 1978; UCD scholarship 1979; UCD prize 1980; UCD & MMH prizes 1981; Prize in paediatrics 1982; Silver medal in surgery 1983.
SHO posts in Neurology, Respiratory medicine; Gastroenteology at the Regional Hospital Galway.
45 original articles; 9 case reports; 19 book chapters/reviews; 6 books; organiser of 6 international conferences; national PI for multiple drug trials; PI for international DETECT project.
Appointments: 01895 811153 Email: firstname.lastname@example.org
Vanessa dos Santos is the mother of 3 boys of whom the youngest has both Down syndrome and cerebral palsy.
She has been involved with Down Syndrome South Africa (DSSA) since his birth in 1995. Vanessa was appointed as the National Chairperson of DSSA in 2003 and later appointed as the National Director of the organisation. Vanessa has also been a Board member of Down Syndrome International (DSi) since 2003.
Much of the work she has been involved in has been focusing on poverty and disability and she has been instrumental in setting up "Outreach Support Groups" and “Self Advocacy Groups” throughout South Africa and is the founder member of the Self Advocacy Movement of South Africa (SAMSA) and Inclusion South Africa (ISA). She is also very passionate on the Human Rights of individuals with Down syndrome and intellectual disabilities. Other areas of interest are policy development that encourages the improvement of lives of disabled people, early intervention, inclusive education, self advocacy and supported employment. She recently completed a Masters in Philosophy in Disability Studies at University of Cape Town.
In 2012 Vanessa became President of Down Syndrome International.
Address: South Africa
Dr Balbir Singh has been an active advocate for the intellectually challenged (Down syndrome in particular) for more than 25 years. He has served in numerous voluntary organisations and government feedback committees. He is a past President and existing Board member of Down Syndrome International (DSi), Advisor and Founding Chairman of Down Syndrome Association Singapore, and has served as a Board member of the National Council for Social Service.
Dr Balbir has been a prime mover of numerous innovative and pioneering programmes and events including viz EIPIC, World Down Syndrome Day, parent support groups and AEP adult programme, and he proactively advocates research in the Social Service and Disability sector. He has headed organising committees of international and regional conferences and has made numerous contributions for presentations and journals articles.
Dr Balbir has had the privilege of very active support from his whole family, from the day his elder daughter, Jaspreet, was born with Down syndrome. He was awarded the PBM Medal (Pingkat Bakti Masyarakat) in recognition of his commendable service in the disability field and social service sector by the President of Singapore.
On 21 March 2011, Dr Balbir received a President's Special Recognition Award at the 2011 World Down Syndrome Day Awards. This award recognised a lifetime's achievement in Down Syndrome advocacy and it was formally presented to him at the 11th World Down Syndrome Congress in Cape Town, South Africa in August 2012.
Dr Rhonda Faragher is a senior lecturer in Mathematics Education at the Australian Catholic University (Canberra campus). She is the current Vice-Chair of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) Down Syndrome Special Interest Research Group (SIRG).
In 2009 she was awarded a Commonwealth of Australia Endeavour Executive Award to travel to Singapore to work with Down Syndrome Association Singapore and the National Institute of Education, Singapore. She has been an Adjunct Professor of Simon Fraser University (Canada) teaching an on-line course in Education and Down syndrome in conjunction with the Down Syndrome Research Foundation (Canada).
Currently, Rhonda is working on a research project investigating the mathematical development of young children with Down syndrome. She is also working with staff in remote indigenous Australian schools supporting children with Down syndrome to learn mathematics.
Rhonda has a teenage daughter with Down syndrome.
Director, Professor of Disability Studies
In 2009 Patricia returned to Australia from Trinity College Dublin to take up the position of Chair in Disability Studies and Director, Centre for Disability Studies, University of Sydney. At Trinity College Patricia was the Foundation Director, National Institute for Intellectual Disability where her work supported a mission of Inclusion through Education, Research and Advocacy. She attracted several research and development grants that focused on inclusive research where people with disabilities and family members were involved in developing and participating in research that they had ownership over.
Prior to Ireland Patricia worked at the University of Auckland where she taught both graduate and post graduate courses relevant for professionals working in the area of human services and special education. Patricia has co-edited two texts that promote disability service as value driven and person centred organisations.
Patricia’s teaching and research interests cover advocacy, deinstitutionalisation, community participation, transition, inclusion, as well as the interface between offenders with intellectual disabilities and the criminal justice system. Her interest in community participation arose from leading a team in New Zealand to relocate people with intellectual disabilities from institutional settings to community based residences. Two major projects that she has recently been involved in Ireland have respectively seen young people with intellectual disabilities gaining further education within university settings as well as people with intellectual disabilities becoming co-researchers within a National Survey of Peoples’ Needs. Results of the later project can be seen here
O’Brien, P., Thesing, A., & Herbert, P. (2006). Alternative Education: Literature Review and Report on Key Informants’ Experiences. Ministry of Education web site. Retrieved January, 23rd, 2009, from http://www.educationcounts.govt.nz/pulications/schooling/5003 (pp.1-144)
O’Brien, P., & Sullivan, M. (2005). Allies in emancipation: Moving from providing service to being of support. South Melbourne: Thomson Dunmore (pp. 1- 236)
O'Brien, P., & Murray, R. (1997, 2008). (Eds). Human services: Towards partnership and support. Palmerston North: Dunmore Press (pp.1-372)
O'Brien, P.M. (1989). Mainstreaming secondary school students with visual impairments. Wellington: New Zealand Council for Educational Research (pp.1-80).
Thesing, A. & O’Brien, P. (2008).Quality indicators for alternative education programmes. In C. Rubie-Davies and C. Rawlinson, Challenging thinking about teaching and learning (pp. 167 - 168 ): Nova Science publishers
O’Brien, P., Newell, C., &McInerery, I. with Thesing A. (2005). In I. Dempsey & K. Nankervis, Community Disability Services : An Evidence–Based Approach to Practice (pp. 27-50). Sydney: University of NSW Press
O’Brien, P. (2005). Haki’s story. In K. Johnson & R. Traustadottir, Deinstitutionalization & people with learning disabilities (pp. 231- 239).London: Jessica Kingsley
O’Brien, P., &Ryba, K. (2005). Policies and practices in special education. In D. Fraser, R. Moltzen& K. Ryba (Eds.) Learners with Special Needs in Aotearoa/New Zealand (3rd ed.) (pp. 22-48). Southbank, Victoria : Thomson Dunmore
O’Brien, P., Thesing, A., &Capie, A. (2005).Supporting people out of one institution while avoiding another. In P. O’Brien & M. Sullivan, Allies in emancipation: Moving from providing service to being of support (pp. 135- 150). Victoria: Thomson Dunmore
Ferguson, P., & O’Brien, P. (2005).From giving service to being of service. In P. O’Brien & M. Sullivan, Allies in emancipation: Moving from providing service to being of support (pp. 3-18). Victoria: Thomson Dunmore
Sullivan, M., & O’Brien, P. (2005).Being of support-a final reflection. In P. O’Brien & M. Sullivan, Allies in emancipation: Moving from providing service to being of support (pp. 213-218). Victoria: Thomson Dunmore
Kane, R..Alcorn, N., Bishop, R., Cardno, C., Crooks, T., Fairburn-Dunlop, P., Hattie, J., Jones, A., O’Brien, P., & Stevenson, J. (2005). Working smarter with electronic evidence portfolios: lessons from the 2003 PBRF assessment exercise. In R. Smith & J. Jesson, Punishing the discipline-the PBRF regime evaluating the position for Education-where to from here? (pp. 164-171). AUT: University of Auckland
Rata, E., O’Brien, P., Murray, R., Mara, D., Gray, S., & Rawlinson, C. (2001).Diversity. In V. Carpenter, H. Dixon, & C. Rawlinson, Theory in practice for educators (pp. 189-210). Palmerston North: Dunmore Press
O'Brien, P. (1997). Human Services: Creating or alleviating disability? In P. O'Brien and R. Murray, Human services: Towards partnership and support. (pp. 64- 81) Palmerston North: Dunmore Press
Espiner, D., Murray, R., & O’Brien, P. (1997).Leadership, personal effectiveness and communication training for human service workers. In P. O'Brien and R. Murray Human services: Towards partnership and support. (pp. 229-240). Palmerston North: Dunmore Press.
O’Brien, P., Shevlin, M., O’Keeffe, M., FitzGerald, S., Curtis, S., & Kenny. M. (2009). Opening up a whole new world for students with intellectual disabilities within third level setting British Journal of Learning Disabilities, 37 (4) 285-292
O’Brien, P., Hamilton, c., & Johnson, K. (2009). Editorial, British Journal of Learning Disabilities, 37 (4) 241 Johnson, K., O’Brien, P., & Hamilton. C. (2009) In conversation with Bill Roberts, Paul Alford and Marie Wolfe. British Journal of Learning Disabilities, 37 (4) 242-244
Walker, A., Tuck. B., & O’Brien, P. (2006).Attitudes towards Christianity and elements of the Catholic faith among adolescents in New Zealand Catholic secondary schools. Journal of Religious Education, 54(2), 42-49.
Edwards, S., O’Brien, P., & Ryan, S. (2005). Count me in: Including students with learning disabilities in Trinity College Dublin, Reach 19(1) 23-30.
Alcorn, N., Bishop, R., Cardno, C., Crooks, T., Fairburn-Dunlop, P. Hattie, J., Jones, A., Kane, R., O’Brien, P., & Stevenson, J. (2004).Enhancing education research in New Zealand: Experiences and recommendations from the PBRF Education peer review panel. New Zealand Journal of Educational Studies, 39 (2), 275-302.
O’Brien, P. (2003). Envisioning the future without the social alienation of difference. International Journal of Disability, Development and Education, 50(1), 22-39.
O'Brien, P., Thesing, A., Tuck, B., &Capie, A. (2001). Perceptions of change, advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community. Journal of Intellectual & Developmental Disability, 26(1), 67-82.
O'Brien, P. (1999). A parent advocacy perspective on inclusion: Conflict or harmony? SET Special 1999: Special Education. Wellington: NZCER.
O'Brien, P., Tuck, B., Cummins, R., & Elkins, J. (1998).Visual behaviour and dyadic interaction between people with intellectual disability and people who are non-disabled. Journal of Intellectual Disability Research, 42(1), 13-21.
Riley, Y., & O’Brien, P. (1998). Perceptions of a shared care programme: The view of families. New Zealand Journal of Disability Studies, 5, 99-166.
Wilson, P., & O’Brien, P. (1998).Creating a self supporting network within a tertiary education setting for people who had periods of mental ill health. New Zealand Journal of Disability Studies, 5, 36-50.
O'Brien, P. (2006). Bridging the divide between the ordinary and the extraordinary. IDA, Intellectual Disability Australisia, 27(3) 3-6; 13-18
O’Brien, P., McLean, M., &Espiner, D. (2003). Professional development in nonaversive intervention strategies: Bridging the divide between academic institutions and the workplace. Referred paper, CD Rom NZARE/AARE conference proceedings, University of Auckland, New Zealand 29 November-3 December
Thesing, A., O’Brien, P., & Herbert, P. (2002). Alternative education quality programmes for young people alienated from the school system. Referred paper, CD Rom, NZARE Conference Proceedings, Massey University, Palmerston North, 5-8 December
O’Brien, P., Shevlin, M., O’Keeffe, M., Kenny, M., Fitzgerald, S., Edwards, s. & O’Shea, A. (2008) Inclusive education: a tertiary experience and transferable model? Lessons learned from the Certificate in Contemporary Living Programme Report prepared for the National Disability Authority by the National Institute for Intellectual Disability, Trinity College Dublin (pp. 1-97). NIID Monograph 3
O’Brien, P., Kenny, M., &Mahony, K. (2006). Resources required for the implementation of the provisions of the EPSEN Act regarding IEP development, implementation and review. Research commissioned by and final report accepted by National Council for Special Education, Dublin (pp. 1-59) NIID Monogrpah 2
O’Brien, P., Thesing, A., & Herbert, P. (2006). Alternative Education: Literature Review and Report on Key Informants’ Experiences. Ministry of Education web site. Retrieved August 11th 2008, from http://www.educationcounts.govt.nz/pulications/schooling/5003(pp.1-144)
O’Brien, P., Thesing, A., & James, W. (2004). Enhancing effective practice in special education; A pilot study. Research commissioned by and final report Ministry of Education, Wellington, New Zealand (pp. 1-51).
O’Brien, P., Thesing, A., & James, W. (2004). Enhancing effective practice in special education; Portfolio of Evidence. Research commissioned by Ministry of Education, Wellington, New Zealand (pp. 1-134).
O’Brien, P., Miller-Burgering, W., Diesfeld, K., Vickery, R., Lett, L. (2002). The interface between people with intellectual disability and the criminal justice system. Stage 2 Training and advocacy. Auckland: Auckland College of Education/New Zealand Law Foundation (pp.1-81)