Thursday, 17 April 2014
Just a few more people with Down's syndrome needed to help
With the support of the Down's Syndrome Association, and with funding from the Medical Research Council (MRC), we have been working together with people with Down's syndrome and their families and support workers to find out what causes dementia (Alzheimer's disease), an illness that can affect people with Down's syndrome at a relatively young age. The hope is that if we understand the cause of dementia in people with Down's syndrome then, new treatments will be developed that could be started early in life and prevent dementia developing. Many of you have volunteered to have pictures of your brain taken using MRI and PET scanners – this requires lying still in the scanners. Those of you who have done so have felt excited by the experience and very pleased to have taken part.
These brain scans allow us to see if people with Down's syndrome have too much of a chemical (protein), called amyloid, in their brains. This protein is deposited in the brain in the form of lots of very tiny microscopic 'plaques' and are characteristic of Alzheimer's disease. So far, 34 people with Down's syndrome have visited Cambridge to have pictures taken of their brains. This has helped us to find out what happens to the brain as people with Down's syndrome get older. We have found that most people with Down's syndrome older than 50 have amyloid in their brain. We also found that people with Down's Syndrome who have dementia had more amyloid in their brain than people without dementia. We still need to learn more about what amyloid does and whether too much amyloid is the likely cause of dementia in people with Down's syndrome. To do this we NEED your help, and are particularly looking for people with Down's syndrome in their 40's, 50's and 60's who may be willing to take part.
You can take part in this study if you have Down's syndrome and are older than 40 years. To find out more about the study, so that you can decide whether you wish to take part, please get in touch with Liam and Tiina either by phone, email or post. Their contact details are below.
More information is available on our project website site, where some of the early results are displayed. There is also a link to a short film, in which one of the participants who helped us with an early pilot study, explains what is involved. Liam and Tiina, can meet you and explain what is involved, using the material we developed with the support from the Down's Syndrome Association and from participants in our pilot study. You can then decide whether or not you wish to take part.
Contact details for Liam and Tiina
Address: Defeat Dementia in Down's Syndrome Study, Douglas House, Trumpington Rd, Cambridge, CB2 8AH
Wednesday, 16 April 2014
The Down's Syndrome Association was shocked to hear of the comments made by the former Mayor of Swindon. It is of concern that someone in such a responsible position demonstrates such a complete lack of understanding about the lives of disabled people.
The Down's Syndrome Association is disappointed by the length of time taken for Mr Martin to resign his position.
Friday, 11 April 2014
Office base: Home-based, ideally for someone based centrally in the project region (North West and North East England)
Salary/Hours: £25,000, Full-time, 35 hours per week. One year fixed term contract with the possibility of a 2 year extension if funding permits.
The successful candidate will develop employment opportunities for people with Down's syndrome in accordance with agreed business plans, and will capitalise on the willingness of employers to lend their support to the progression of individuals with DS within their workforce. This project will be delivered in the North East and North West of England.
Closing date for applications: Thursday 24 April 2014.
Interviews: week beginning 5 May 2014.
Tuesday, 08 April 2014
In 2010 we developed and launched our Tell it Right, Start it Right campaign and training following our original survey in 2009 for new parents and health professionals involved in the maternity services. Having delivered successful training for the last 3 years we are re-running the survey to evaluate the campaign and to
prepare for the next phase.
We firmly believe that parents have a right to accurate up-to-date information about Down's syndrome prior to screening in pregnancy and when their baby is diagnosed with Down's syndrome, whether this is before
or after birth. We want to help all parents to get accurate and balanced information so that they can make informed decisions.
We need your help to know what information is currently being provided to pregnant mothers and new parents of babies with Down's syndrome. We would very much appreciate your help by completing a short online survey to tell us your experience of receiving information about Down's syndrome either during pregnancy or when you first discovered your baby had Down's syndrome. This survey should take about 10 minutes to complete.
We understand this is a sensitive subject, but your views are very important to us, and you can help us to build a picture of what has been happening around the UK since 2009. Your response to this survey will be anonymous unless you provide your details in the optional box at the end of the survey. We will not share your details with anyone else.
Was your baby with Down's syndrome born after 1st January 2010 in the England and Wales? Please complete our survey here.
Wednesday, 26 March 2014
New evidence indicates that children with Down's syndrome may not compensate for early episodes of glue ear as easily as children who do not have Down's syndrome or overcome its effects on speech and language development. The authors of this important new research highlight the need for speech and language therapy services to be involved as soon as a child is diagnosed with severe, ongoing hearing difficulties and suggest that joint clinics with audiologists could be helpful.
Please share this information with your speech and language and audiology/hearing services.
Addressing this evidence based need is a priority for children with Down's syndrome with hearing loss during their early years, including, for example, giving parents and early education settings advice about how to create optimal listening environments and promote children's listening skills.