President's Report
President's Report for Down Syndrome International Annual General Meeting
Dublin, Ireland - August 2009
I write this report as President with some regret. I took over the role from Jo Mills at the Board meeting held on March 11th and 12th 2008 in Canada after it became evident that Jo could not continue due to her illness. Jo passed away 2 months later.
Her commitment and drive is an example to all of us. Jo expended so much of her flagging energy in the cause of DSi, and even in those last 2 months when most of us would have turned inward, Jo was hosting another Board meeting. It is unlikely we will ever see such selfless dedication again and I record my deep appreciation of her work for DSi.
I also extend my thanks to the DSi Board members: Kitt Boel, Professor Roy Brown, Professor Jacob Burack, Pat Clarke, Associate Professor Monica Cuskelly, Dr Marja Hodes, Dawn McKenna, Dr Eiichi Momotani, Professor David Patterson, Dr Rekha Ramachandran, Vanessa dos Santos, Dr Balbir Singh, Bridget Snedden, Dr Daniel Weeks and Paul Zanon.
DSi is honoured to have Professor Janet Carr, Professor Cliff Cunningham, Professor Sylvia Garcia-Escamilla, Professor Juan Perera, Dr Seigfried Pueschel and Rami Ramachandran join us as advisors.
In Dublin this year we celebrate our 10th World Congress and we mark the 50th anniversary of the publication of Professor Jerome Lejeune's discovery of the extra copy of chromosome 21 which causes Down syndrome.
Now known as trisomy-21 because of the 3 copies of the 21st chromsome, Down syndrome was first described by the English doctor, John Langdon Down in 1866, but until Profesor Lejeune's publication in 1959, the ultimate cause of Down syndrome was unknown.
Professor Lejeune and Dr John Langdon Down are regarded as the pre-eminent contributors to our present understanding of Down syndrome, not only because of their seminal research into Down syndrome, but also because each of them contributed much of their own time and money to advocating on behalf of people with Down syndrome and their families.
Professor Lejeune provided inspiration to parents and professionals who met him, and they drew strength and hope from his optimism and his simple and profound dedication to humanity. I spent a wonderful day with him in Paris just months before he died and we talked about the need for an international organisation dedicated to providing information and support for families of people with Down syndrome.
DSi came into being in 1993 and it has attracted the support of many professionals and parents around the World. The Board of DSi has identified the principal objectives of the organisation and has formulated a 5 Year Plan to achieve these objectives.
Finally, I would like to record my thanks to the Down's Syndrome Association (UK), located at the former home of Dr John Langdon Down in Teddington, South West London, for allowing us to share their offices, and also to our Executive Committee, which has been a strength of support to me. I would also like to acknowledge the high level of enthusiasm and involvement of our Board members this year and to applaud their ongoing efforts to improve the lives of people with Down syndrome and their families.
