Today is World Down Syndrome Day. I attended a session at a cafe tonight about "The Future of Down Syndrome Research". It was sponsored by Novel Tech Ethics, a research team affiliated with Dalhousie University. There was a panel of three speakers, each of whom made a few prepared remarks and then and open discussion.
It was interesting to hear the views of so many different people connected to the Ds community. Several parents spoke about the need to include individuals with Ds in framing and carrying out the actual research. The analogy was that no one would think it acceptable if research relating to women's role in society was conducted solely by men and that similarly, people with intellectual disabilities should be involved in research. I thought it was a good point and probably not one that most people think about. I think the research community has to challenge itself to do a better job of being inclusive. The point was made that it would have been relatively easy to include a speaker with Down syndrome on the panel tonight.
Aside from that, there were lots of topics covered. Most areas where people wanted more research were really applied. Questions like How can I prevent my son from developing Alzheimer's? What can be done to improve things like memory and speech in people with Ds? There were some bigger picture questions like Is it acceptable that CIHR spends more than twice as much funding research into detecting (and implicitly, preventing) Ds versus how to improve the health of people living with Ds?
It was an interesting event and a good opportunity to meet some parents that I hadn't met before. I encourage all of my readers to take the opportunity to think about or look up some information on a topic related to Ds that interests you. Also, take a moment to check out this photo montage "See the Ability" put together by the Canadian Down Syndrome Society in celebration of this day - included is a young man from Tillsonburg!
Happy World Down Syndrome Day (officially declared by the UN in 2012).
Mary Ellen
