By Yona Lunsky
September 2014
At the end of September, I attended the two-day Jerome Lejeune International Clinical Conference at Campus De Cordeliers in Paris, France. The meeting brought together clinicians and speakers from Europe and North America to share information on best practices assessment and intervention in intellectual and developmental disabilities. I opted to stay in town for one extra day to see the sites and absorb what I had heard. On my way back from a morning walk, I noticed a mother with her daughter who had Down syndrome. The girl was perhaps 8 or 9 years old. I could tell it was an exciting day for the daughter, but the mother seemed nervous and lost.
I realized this was the day for families sponsored by the Jerome Lejeune Foundation. At the second oldest medical school in the world, Jerome Lejeune, and colleagues discovered the 47th chromosome that causes Down Syndrome. This historic space was opened up to families for a free day of support and education. I was immediately struck by the weary energy of the parents in the room, some with young children, some with grown children, and some alone. The serious looks on parents’ faces reminded me that getting to the centre of Paris on a Saturday morning for a full day educational event is no simple task.
I felt tremendous respect for these families. I wished I could have spent the day learning with them, but my poor French would not allow for that. Many of us do not have the daily experience of trying to communicate when we cannot find the words. But this has been my experience every day here in Paris. I saw the head of the Jerome Lejeune Institute and he explained to me, almost apologetically, that translation wasn’t available - today was focused on parents. I wonder if he thought that I did not realize that the academic conference was over and I came by mistake! I tried to explain to him in broken French that I felt I needed to come inside the medical school for at least a short time, despite the language barrier. He quickly, and rightly, turned back to his main audience, the parents. I felt a flood of admiration to see so many families in attendance. I wanted to express my sense of honour of being in the room with them, but felt tongue-tied, perhaps as they do, when trying to express themselves to professionals.
Over the two day academic meeting, I learned a great deal from presenters and conference participants about the important research activities here on the other side of the Atlantic. They seemed equally impressed with the work we have been doing in Canada as scientists and as clinicians. They do not have access to such a rich repository of data as we do. They also don’t have developmental disability focused primary care clinical guidelines and/or the clinical tools that we have to help them practice these guidelines. It was satisfying to share with them websites with volumes of relevant clinical wisdom translated into French. They were also interested in the summarized findings from the H-CARDD program about big picture health issues. I realized that our international colleagues could not find this information prior to the conference because they simply did not know where to look. I was reminded of how important it is for us to link our research with our resources to help busy people, whether they are parents, clinicians, or scientists, to become aware of the international efforts of working towards the shared goal of improved health.
So how does this relate to H-CARDD? I am reminded of the need to exchange information. We need to make the best knowledge easily accessible in language that is understood by the user of the information. I am reminded that all of us can be teachers and all of us have something to learn. If we are to advance, and take advantage of the existing knowledge base, we have to be listening and sharing. I would like to see an education day for families where I live, similar to the one in Paris, with a focus on health, free of charge, and with childcare provided.
If scientists and clinicians can gather to be trained on how to support families, families can gather to be trained on how to support clinicians. In addition to these live interchanges, I hope we will use technology, including this website, to share ideas and to learn from one another. Please help us with the launch of our new website to begin this exchange.