POSEIDON – The Research Pilot Begins

logo poseidon jpg

In the UK, The Down’s Syndrome Association (DSA) started the first pilots for the POSEIDON Research Project.  Pilots will be underway soon in German and Norway.

The Test Users – People with Down’s syndrome (Primary Users) and Parents and Carers (Secondary Users) are now testing the new POSEIDON apps.  To assist in the research and development of the apps, the Test Users will give us their feedback so that the POSEIDON Developers can develop the apps even more.


Dan is one of the testers. Dan said he is now looking forward to ‘trying out the apps for real’ and telling the POSEIDON Project Team what he thinks about the apps.

Alexandra POSEIDON blog

Alexandra, a POSEIDON Research Assistant from Middlesex University working with Raffaella, one of the Secondary Users.
To find out more about the POSEIDON Research Project, contact Bridget Hammerton.
Email – bridget.hammerton@downs-syndrome.org.uk or telephone 0333 1212 300
Posted in Poseidon

New WorkFit Team Members

Veronica Mulenga- Employment Development Manager

As we develop the WorkFit project, we have been eager to expand the team. Successfully securing funding from a generous charitable trust and ICAP (a leading financial markets operator and provider of post trade risk mitigation and information services) has enabled us to appoint two new members of staff in the WorkFit Team.

We are very excited to welcome Alison Thwaite and Judith Day. Alison and Judith joined us in April and will be responsible for delivering WorkFit in the North West/East of England and the South West of England respectively.

Alison WorkFit photo

Alison says: 
“Working as an Employment Development Officer is often challenging and requires a significant commitment both to the candidates and employers that sign up to the programme, but I hope that my experiences and belief in the programme, along with a number of great success stories will ensure that employers and other organisations in my area feel supported and motivated to work with the DSA. Ultimately our aim is to meet the needs of job seekers in our community to help them to live full and rewarding lives and fulfil their personal development and career aspirations.
Judith WorkFit photo a
Judith says:
“Whilst working for Camphill Village Trusts, I became passionate about people with learning disabilities being given opportunities for employment in a way that was fulfilling for them. Joining the Down’s Syndrome Association and working on the WorkFit project is giving me the opportunity to get out and connect with employers and look at the employment issue in a holistic way. I am really looking forward to the next three years of this project and the exciting times that lie ahead.”
The addition of Alison and Judith to the team will enable us to expand our reach and provide a more localised employment support to people with Down’s syndrome, employers, parents/ carers and local affiliated Down’s Syndrome Support Groups.
We look forward to updating you with exciting new placements and developments soon.
WorkFit supports young people and adults with Down’s syndrome to access meaningful work opportunities that can benefit the rest of their lives. We need your local knowledge and your on-going support to help us achieve this. Do you know of inclusive employers?  Do you know employers who are currently or who have the potential to support people with Down’s syndrome? We are guessing for every young person with Down’s syndrome there is a working parent or relative or friend who could potentially ask at their place of work?
Tell us who the employers are by contacting the WorkFit team on 0333 12 12 300 or email us on dsworkfit@downs-syndrome.org.uk
For more information visit the WorkFit website www.dsworkfit.org.uk
 Workfit_logo+strap    ICAP logo
Posted in WorkFit

‘Normansfield – Protecting a Theatrical Past’

Down's syndrome

The Down’s Syndrome Association (DSA) has received £85,100 from the Heritage Lottery Fund (HLF) for its exciting project: ‘Normansfield – Protecting a Theatrical Past’.  

The HLF’s grant means that vital building works can begin to protect the rare, Victorian Grade II* listed theatre and its remarkable collection of original, hand painted scenery.  The scenery, which has no equal anywhere else in Britain, is extraordinarily complete with more than 80 flats, 18 borders, 5 painted cloths and many individual pieces.

Down's syndrome

The funding will also allow the creation of a fully catalogued, digital archive of the Victorian scenery to create a ‘virtual theatre’ which will be available at the centre and on-line.  The ‘virtual theatre’ will enable a schools and further education programme to explore this important collection.   It will also be accessible to members of the public to learn more about the fascinating life of this beautiful theatre.

Down's syndrome

The theatre was built in 1879 by Dr John Langdon Down as part of Normansfield which was started as a home for people with learning disabilities in 1868.  Normansfield (now the Langdon Down Centre) is widely regarded as the ‘spiritual home’ of Down’s Syndrome.  This is a rare and beautiful example of a late Victorian, private theatre which is considered to be of great architectural and historic importance. The stage still contains the original working flaps and is one of only two working theatres with this in place today. The scenery was expertly cleaned and conserved in 2002/2003 and this HLF funding will ensure that the conditions in which the scenery is stored are not at risk of flooding and damp.

Carol Boys, the Chief Executive of the DSA (owners of the Normansfield Theatre) says:

“We are delighted to have received the support from the Heritage Lottery Fund. This award will ensure that our Victorian scenery is further protected and will be accessed by the public digitally and through our educational programme”.

Stuart Hobley, Head of Heritage Lottery Fund London says:

“Thanks to National Lottery players, this unique collection of theatrical scenery can be saved from deterioration. The new digital archive will allow even more people to discover and cherish the history of Victorian Normansfield and its theatre.”

Arial Circular Logo_hires    Down's syndrome

Learn more about the Langdon Down Centre…

Posted in Fundraising, Normansfield Theatre

My experience in CanDoCo / Ophir Yaron

Originally posted on Down 2 Earth Magazine Editor's Blog:

Today’s guest blog is by Ophir, who is part of a dance company called CanDoCo.

Do you go to a dance class or company? Would you like to share your story? Or maybe you enjoy a different hobby? Why not tell us about it?

Email your stories for the blog to Kate.Powell@downs-syndrome.org.uk.

My experience in CanDoCo / Ophir Yaron

CanDoCo dance contemporary company is a professional group of disabled and non disabled dancers. We create an excellent piece of dance from our own experience and we always want the audience to take part and support us wherever we go.

We all have different creative styles and our own movements. We do try new ways of sharing different ideas with our friends and leaders from dance. It is very interesting to find different movements and explore our own dance and feelings.

I have danced with CanDo2 when we recently performed at the…

View original 281 more words

Posted in D2E Magazine Editor's Blog

Event: 1-5pm 26 July Defeat Dementia in Down’s Syndrome Research Projects

U of Cambridge logo

Defeat Dementia in Down’s Syndrome Research Projects

Cambridge University Down’s Syndrome Research Group will be at the Langdon Down Centre

1pm – 5pm | 26 July 2015 Please drop in during the afternoon.

 You are invited to come and meet the team:
  • Find out about their research and learn about the brain
  • Chat to our friendly research group
  • See what it is like to take part in research
There will also be refreshments and some fun activities.
If you would like to attend, please RSVP to vanda.ridley@downs-syndrome.org.uk or by phoning 0333 12 12 300 to let us know how many people will be attending with you.
The Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS.
Telephone: 0333 1212 300 | Email: info@downs-syndrome.org.uk
Cambridge Intellectual and Developmental Disabilities Research Group are conducting a study based in partnership with the Down’s Syndrome Association (DSA) and the Wolfson Brain Imaging Centre (WIBC) Cambridge, to investigate the risk of dementia in people with Down’s syndrome (DS).
This four year study is funded by the Medical Research Council (MRC). We believe that a chemical (protein) in the brain called beta amyloid may be a key factor in causing dementia of the Alzheimer’s type, and that people with DS may be more vulnerable to this type of dementia as they have more of this protein in their brains (the gene for the protein is on chromosome 21, which is inherited in triplicate in people with Down’s syndrome). If excess beta amyloid is found to be an important factor, then medications being developed to reduce beta amyloid deposition in the brain could possibly prevent dementia developing. This study will use new brain scanning techniques to look at the amount of beta amyloid in the brain and whether it is associated with brain changes and the symptoms of dementia.
If you have DS or know someone with DS over the age of 40, who might be interested to hear more about this study, please contact either Tiina or Liam by email on the details below.
To find out more please contact the research team directly. Telephone: 01223 746127 or visit www.dementiainDS.com
Tiina: ta337@medschl.cam.ac.uk or Liam: lrw34@medschl.cam.ac.uk
Posted in Research

Health Book, Annual Health Checks and Reasonable Adjustments in Health Care


Health Book and Annual Health Checks Update

Did you know that everyone with Down’s syndrome aged 14 years and upward is now entitled to a free annual health check from their GP? Until last year, only those over the age of 18 years were entitled to a free annual health check.
In addition to sending a free copy of the DSA’s Health Book to all our adult members with Down’s syndrome during 2014, we have just sent copies of the Health Book to everyone with Down’s syndrome on our membership database between the ages of 14 and 17 years so that they can use it at their annual health check and other health appointments.
We hope that the Health Book gives teenagers and adults with Down’s syndrome a sense of ownership over, and involvement in, their own health care. We also hope that its use will help improve long term health record keeping that will benefit people with Down’s syndrome, medical practitioners and those who provide paid support.
We want to make sure the Health Book remains relevant to people with Down’s syndrome, GPs, families and support workers.  If you have used the Health Book, or supported a person to use it, we would like you to fill out a quick survey please.
The feedback that you give us will help us to ensure that the Health Book continues to be a useful tool to maintain and improve the health and wellbeing of people with Down’s syndrome.
If you need further copies of any of the pages in the Health Book, you can download them here.

Reasonable Adjustments in Health Care or what changes can health professionals make to the services they offer to better ensure that people with learning disabilities receive the health care they need?

You may have heard the term ‘reasonable adjustments’ and wondered what it meant.  Since the Disability Discrimination Act (1995) and the Equality Act (2010) (this does not apply to Northern Ireland) public services are required by law to make reasonable adjustments to help remove barriers faced by people with disabilities when trying to use a service. The duty under the Equality Act to make reasonable adjustments applies if you are placed at a substantial disadvantage because of your disability compared to people without a disability or who don’t have the same disability as you.
So for people with physical disabilities reasonable adjustments may include changes to the environment like ramps for the ease of wheelchair users. For people with learning disabilities ‘reasonable adjustments’ may include longer appointments, information in easy read and support around consenting to treatment. The use of the DSA’s Health Book by GPs may be viewed as a reasonable adjustment on the part of the GP to ensure that a person with Down’s syndrome receives the checks and treatment that they need.
You can find a database with lots of examples of reasonable adjustments in health care settings at the Improving Health and Lives website. At the site you can also download an easy read publication about reasonable adjustments for people with learning disabilities.
If you want to know more about the duty to make reasonable adjustments in health care, take a look at the website of the Citizen’s Advice Bureau. The site contains a useful definition of what’s meant by ‘reasonable’.
Please take a moment to complete our Health Book survey.
Posted in Health

DSA Transition workshop in Manchester 24 June 2015

S Manchester logo
Young people leaving school, going to college, getting a job …. These are sources of anxiety to any parent, but even more so when a young person has Down’s syndrome and will need support in adult life. We were therefore delighted when the South Manchester Down’s Syndrome Support Group asked the DSA to deliver our Transition Workshop:  ‘Young people with Down’s syndrome – moving to adult life’ as part of their training programme.
Lesley Black and Charlotte Knowles, DSA Information Officers, presented a very full programme. The day started by encouraging participants to share the aspirations that they and their young people have for the future. These were very much the same as for any families with teenagers, but there were some real concerns about lack of services for adults.
Following the group discussion, Lesley and Charlotte shared information and advice for planning ahead, as well as highlighting the main trigger points when decisions may need to be made.  Charlotte explained how the Mental Capacity Act can ensure that adults with Down’s syndrome are at the heart of decision making. Further presentations provided an overview of education rights and options for the 14-25 year age group and practical advice for getting the best from social care assessments.
It was a very productive and interesting day for all concerned.  Thanks to South Manchester Down’s Syndrome Support Group for arranging everything (and to the Edge Theatre Café in Chorlton for an amazing lunch!)
If you interested in receiving training from the DSA on a wide range subjects, please contact us on 0333 1212 300 or email info@downs-syndrome.org.uk
Posted in Transition