Sleep Webinar Part 1: Dr Liz Corcoran - Why focus on research about sleep and Down syndrome?

Edited transcript of YouTube video.

It is lovely to have you all here for this webinar about sleep, and the particular issues our loved ones with Down’s Syndrome might face in the night time hours, or at other times.

I want to take a moment to tell you a little about who we are, as an introduction, in case you have never heard of us. The Down’s Syndrome Research Foundation has been around for over 20 years.

I am Dr Liz Corcoran, I am a sibling to David, who has Down’s syndrome. He is the adult you see in some of the photos here, and he has kindly shared his pictures from his sleep study a little while ago. He was very happy to share with people, particularly with younger people who have to face doing a sleep study as well: just to show them that it wasn’t scary at all. Actually, he has been managing to wear his CPAP machine every night - most nights!

That’s why I am involved with Down’s syndrome and the Down’s Syndrome Research Foundation. We are the UK's only Down’s syndrome research charity and our vision is for people with Down’s syndrome to have a long, healthy, and happy life. We know also that families are impacted as well.

We want to bring you the best scientific research needed for the issues that affect our community. We do this by funding and promoting groundbreaking research, as we want to improve understanding of Down’s syndrome. A further important part of what we do is supporting the human rights of people with Down’s syndrome and their families, through advocacy. You may have heard of some of our recent victories. We're very happy about the restarting of the Down’s syndrome APPG (All Party Parliamentary Group) and the Down’s syndrome Bill that's being proposed and moving through Parliament. We’re very happy to be a small part of the work that's going on there, behind the scenes.

Why does research matter? It has important impacts. First, it means that people with Down’s syndrome can get evidence-based treatment. There are lots of questions – particularly holes in research around sleep. However, there are also lots of other places where we lack good guidance and good evidence on the best treatments for people with Down’s syndrome, when they have particular conditions or problems. We want them to live richer lives, to have the best quality of life, and to have healthier lives.

I often talk to local groups, about nutrition, and about lifestyle: sleep is a huge part of that. As a foundation we want to support sleep research and promote understanding of good sleep.

We also do advocacy work because we want people with Down’s syndrome to have choices and to be able to live the life they would want to live.

That includes helping to make sure there's up-to-date research, and that they have equal rights to research funding. At the moment, you may not be aware that just over five pounds per person with Down syndrome per year is spent on research. We think this is terrible, and we'd like to see that number change. We need to lobby the government to improve this, but we also need to mobilize the community, to understand why research matters.

This is just one aspect. I want to spend a little bit of time inspiring you, particularly that this is just one aspect, sleep that impacts people with Down’s syndrome.

If I can encourage you to get behind the work of the Foundation and support research in any way you can, we would be so grateful.

This segment is part of a full length Webinar.