Defeat Dementia in Down’s Syndrome

Just a few more people with Down’s syndrome needed to help

Dementia
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
Tel: 01223746127
Email: lrw34@medschl.cam.ac.uk and ta337@medschl.cam.ac.uk
Address: Defeat Dementia in Down’s Syndrome Study, Douglas House, Trumpington Rd, Cambridge, CB2 8AH
Websites:
www.dementiainds.com
www.downs-syndrome.org.uk/about-us/research/current-research-projects/dementia.html
Posted in Research

Training Course: Young People with Down’s Syndrome – Moving to Adult Life

A workshop for parents living in the London area

Description

This workshop is intended to help families of young people with Down’s syndrome plan ahead for adult life. It is aimed at parents / carers of young people between the ages of 12 and 22.
If you are asking questions such as …
• What might adult life look like for a young person with Down’s syndrome?
• What are the options for education and training once my son or daughter leaves school?
• How will the new SEN reforms affect young people?
• Who makes decisions once young people become adults? Can parents still be involved?
• What help is available to help my son or daughter plan for independent living?
… then this workshop is for you.

Draft Programme

The programme for the day:
• Introduction: What does it mean to be an adult? Case studies of adults with Down’s syndrome.
• Learning for life: This session will look at further education and training. It will include details of the new system of Education, Health and Care Plans from September 2014
• Lunch and sharing information
• Making choices and increasing independence: This session will include information on the Mental Capacity Act and how it affects young adults with learning disabilities and their families
• Support for daily life: This session will focus on adult community care assessments and plans – how to prepare for the assessment and get what your son or daughter needs. It will include changes to legislation affecting young people entering adulthood.

The course is for?

Parents and carers of young people with Down’s syndrome aged 12-22. Because of the funding conditions you must live within Greater London.
Date / Time
Saturday 17 May 2014 10am – 3pm
Location of course
Langdon Down Centre, 2a Langdon Park, Teddington TW11 9PS
Trainers
Vanda Ridley and Lesley Black
Fee
Free. The DSA has obtained funding to run this free workshop for parents of young people with Down’s syndrome living in Greater London.
How to book
For more information or to reserve a place:
• email info@downs-syndrome.org.uk with the subject line Transition Workshop and include your name, address, email address, telephone number and the age of your son or daughter
• call – 0333 1212 300
• Spaces are limited so book now!
Posted in Training, Uncategorized

Kevin Kilbane Book Review – KILLA

By Paul Zanon
Killa  ????????
When Kevin Kilbane contacted the Down’s Syndrome Association in 2005 he was in need of a great deal of information and support regarding something he had little knowledge of – being a parent of a daughter with Down’s syndrome. Within literally a few weeks of his first interactions with the DSA he agreed to become a patron and has ever since became an incredible supporter of the DSA on a number of fronts, including fundraising, numerous public appearances at DSA events throughout the UK and is also now a patron for the DSActive programme (sports for people with Down’s syndrome).
In 2013, Kevin raised the bar to another level of support. Apart from running the London Marathon for the DSA raising a sterling fundraising total, he also launched his autobiography KILLA (available on Amazon and all good book shops!). The book was ghost written by acclaimed author and DSA parent member Andy Merriman, and is a great story about a very endearing man who also happens to be Ireland’s third most capped player of all time, with 110 appearances for his country, including an incredible 66 consecutive matches. Kevin’s presence on UK soil wasn’t bad either, playing alongside the likes of Wayne Rooney at Everton and also donning the studs for a number of other clubs such as West Bromwich Albion, Wigan and Hull before retiring in 2012. The book takes you through Kevin’s journey as a child of Irish immigrants growing up in a tough region in Lancashire, through his entire football career and his emotions of becoming a parent of a child with Down’s syndrome. Some roller coaster episodes which will give you a platform to share empathy and pride.
The royalties of the book are split evenly between the DSA and DS Ireland, so please jump online or go to your local bookshop and purchase a copy!
See: Amazon | DSA Website News
Posted in General

Parents Meeting | Children who have a Dual Diagnosis ASC/DS

Stuart ASC DS meeting Apr 14 1
Professor Jeremy Turk came along to DSA National Office on Saturday 5 April to talk to parents about the use of medication in supporting behaviour. There was a good turnout of parents with both young and adult sons and daughters. Professor Turk’s presentation, followed by questions and answers, was very well received.
Professor Turk talked about what conditions medication might be useful for whilst emphasizing that medication should never be the first step in tackling a behaviour issue. Professor Turk stressed that it should only be considered after psychological, educational, family and social approaches have been tried first. During his presentation Professor Turk revisited the point several times that medication should be prescribed as part of a multidisciplinary approach (e.g. with other services such as social services, education, psychology also providing support). Professor Turk also sought to dispel some of the concerns held around medication by talking about the targeted and refined nature of the medications now available compared to the ‘blunt instruments’ such as Valium which were widely used in the past.
One of the major benefits of the ASC/DS meetings is for parents to have the chance to swap experiences and tips. There were numerous lively discussions and much information sharing over lunch at the refectory table in our wonderful newly refurbished basement area. It was obvious from some of the conversations taking place that a dose of humour coupled with inventiveness played a big part in helping parents to deal with some challenging situations.
After lunch DSA staff asked parents to share their experiences of supporting positive behaviour in their children. Some parents had bought along some communication resources to the meeting that had helped their children to make choices and to communicate their wishes.
The next ASC/DS meeting will be on Saturday 4 October where Dr Parr and Dr Newall will be talking about their research looking at:
  • the range of ability and numbers of those children with Down’s syndrome who also have atypical behaviour;
  • whether screening between the ages of three and five can indicate ASD in children with Down’s syndrome.
Please email stuart.mills@downs-syndrome.org.uk if you would like to attend.
Posted in Health

DSA Christmas Card Competition 2014

Christopher Lodge     Kate Stoddard    Katie Rickersay    Lisa Joan Bradley

With summer just around the corner, we realise this may be a strange request but we NEED YOUR HELP!

We are looking for Christmas card designs for our 2014 campaign and would love for you to send in your designs. They can be of anything festive you want – Christmas trees, Santa Claus or Snowmen, as long as they are really bright and colourful. Here are just some of our past winners to give you an idea of the kind of thing we’re looking for. It could be that you drew something over the Christmas period that you want to send in or you can design a brand new image for us.
Please send your designs:
  • by post to: Alexa Dizon, Down’s Syndrome Association, Langdon Down Centre, 2a Langdon Park, Teddington, TW11 9PS
  • by email : alexa.dizon@downs-syndrome.org.uk
We’ll put our top five up online for our members and supporters to vote for their winning design which will be made into a Christmas card and be sold as the official Down’s Syndrome Association card. So you could be seeing your design on mantelpieces all over the country!
All designs to be submitted by the deadline of 1 May 2014.
Posted in General

Down’s Syndrome Photography Project

thomas_dog    thomas_with_mam
My name is James Hobson, I am a photography student in my final year of study at Middlesex University, London.
I am currently developing a project which is focused on positively raising awareness of Down’s syndrome.
I started the project over a year ago with my good friend David who has Down’s syndrome and went to mainstream school with me. I have since spent the last few months developing my work and expanding the series with new people I have managed to contact.
The series I am producing is of people in their daily environments so either at home, work or participating in social activities such as sport, so I am able to capture images with the subject relaxed and comfortable in the setting. I am based in the North East of England and London and would be looking for subjects in either of these locations.
I would be very grateful of any opportunity to meet with anyone who would consider being involved in the work which is to be exhibited this June at The Old Truman Brewery on Brick Lane as part of my degree exhibition show.
I am happy to offer copies of the work once produced if people would like prints as a thank you for being involved in the work. I look forward to hearing from you.
Please contact me by email or telephone: photo.jameshobson@gmail.com | 07921 260055
Posted in Uncategorized

Down 2 Earth Magazine

By Kate Powell, Down 2 Earth Editor and Amy Deakin, Information Officer
keep calm kate
Kate Powell

Have you heard of Down 2 Earth Magazine?

Down 2 Earth Magazine is a magazine written for and by people with Down’s syndrome. It is sent to all DSA members who have Down’s syndrome two times a year. People with Down’s syndrome can join the DSA for free! If you would like to join the DSA and get the magazine click here.

About Down 2 Earth Magazine

The editor of Down 2 Earth Magazine is Kate Powell, who has Down’s syndrome. She loves reading all your letters and emails, doing interviews and writing reports for the magazine.
Kate now has a new blog! You can read her blog here

Changes to Down 2 Earth Magazine

The editor Kate Powell has decided to change the Down 2 Earth Magazine to make it better. We are changing the way the front cover looks and what we put in the magazine. We want to have more articles and stories from our readers in the magazine.

Down 2 Earth Magazine is YOUR magazine!

The Down 2 Earth magazine is all about YOU. We would love to read your articles, reviews, poems, letters and stories. We would also really like to see your photos and drawings.
You can write about whatever you like.
Here are some things we would like people with Down’s syndrome to write to us about:
·         Things you like
·         What you are doing
·         Recipes
·         Your hobbies
·         Reviews
·         Letters
·         Poems
·         People you admire and why

How to send us your stories, articles, pictures and letters.

Send us your stories, letters, articles and pictures to Kate Powell, the Editor. You can email Kate at: Kate.Powell@downs-syndrome.org.uk.
You can also post your stories, letters, articles and pictures to us. The address is:
Down’s Syndrome Association, Langdon Down Centre, 2A Langdon Place, Teddington, Middlesex, TW11 9PS
Thank you for reading. We can’t wait to see your articles, stories and pictures!
Posted in Down 2 Earth