Does your son or daughter have obstructive sleep apnoea?

Would you like to contribute to medical education?

Down Syndrome NSW has been invited to participate in a learning unit for third year medical students from the University of Western Sydney. The students will be researching the impacts of sleep apnoea on people with Down syndrome of all ages, and the impact on everyday family life.

They need to speak with families on two occasions, during March/April 2010, for some hands-on information. The interviews/meeting can take place in your home, at you convenience.

We are interested in people with DS of all ages, and from any area, whether your son or daughter has been successfully treated for sleep apnoea or not, whether you have completed formal sleep studies or not.

If you are interested in participating, please contact us on info@dsansw.org.au – initial expressions of interest can be made before the Christmas break

The Enchanted Forest - fundraiser, 2010

Kids for Life 6th Annual Ball

The Enchanted Forest
27th March 2010

Hordern Pavilion

Go to www.kidsforlife.com.au for tickets and further details.
Down Syndrome NSW will be a beneficiary in 2010.

Good Weekend magazine

The Good Weekend magazine (distributed with the Sydney Morning Herald and The Age in Melbourne) is celebrating 25 years of publications. In a special edition to mark the occasion, GW reprised a selection of highlights from the popular "The Two of Us" column, with a catch -up on what "seven of the most memorable duos" are up to now. Among them were Nick Hogan, and Damien Jones, who featured in July, 2006. Greg Bearup brings readers up-to-date:

Damien Jones was a young punk at uni when he met a Down syndrome kid, Nick Hogan, who insisted on joining his game of park soccer. They became friends and, after checking him out, Nick's parents asked Damien to be their son's babysitter and, later, flatmate.

"Damien is the closest friend I have ever had," said Nick. "I love him. He makes sure I do the right things. He helps me save my money. He is always gentle and tells me funny jokes."

Nick helped Damien to grow, too. "I had come from a pretty dysfunctional family ... It gave some structure to my life and gave me a sense of responsibility to be there for him."

Damien has moved to Melbourne, but "we talk on Skype all the time and [my wife] Karoline and Juno, our little girl, are often up in Sydney, visiting Nick and his family," says Damien. "Nick is fantastic with Juno and they'll play together for hours." Damien and his family are planning to go on a Pacific cruise with Nick and his girlfriend, Ruth. "It's gonna be crazy," says Damien. "Cool, but crazy."

Click here for the original column which was reprinted in the DS NSW Newsletter, Spring 2006.

Playgrounds for everyone

These children’s playgrounds have been designed to be accessible for all kids, and are open to everyone, so kids can play side by side.

All Abilities Playground
Bernie Mullane Sports Complex
Marella Avenue, Kellyville
(this one will be officially opened by Baulkham Hills Shire Council on International Day of People with Disabilities, 3rd December 2009)

Livvi's Place,
Timbrell Park, Five Dock
www.touchedbyolivia.com.au

World Down Syndrome Day Art Competition!

Enter our World Down Syndrome Day Art Competition – and help us create a series of unique greeting cards for World Down Syndrome Day, 21st March 2010.

The greeting cards will contain seeds of native plants, so recipients of the cards will be able to plant a seed for World Down Syndrome Day – and help understanding and acceptance of people with Down syndrome to blossom and grow in our community.

Entries from children and adults with Down syndrome and brothers / sisters especially encouraged.

Send drawings, paintings or artworks in whatever medium you like to events@dsansw.org.au or by post to (no stamp needed):

Phillip Prideaux, Executive Officer
Down Syndrome NSW
Reply Paid 2356
North Parramatta NSW 1750

Prizes include the honour and glory of having your artwork on one of the official World Down Syndrome Day greetings cards, as well as some other goodies.

Competition closes: Friday January 29th 2010

Inquiries: Priscilla Leong 9841 4402, priscilla@dsansw.org.au

InterACT 3 day Holiday Workshop January 2010

Powerhouse Youth Theatre and Accessible Arts

Street Dance
This workshop is open to 15 to 18 year olds of mixed abilities. Great for young people living with a disability and their friend and/or siblings. The workshop will be conducted over three days x 3 hour sessions. Spaces are strictly limited to 15.

Where: Fairfield School of Arts

What: a workshop on the latest street dance moves, culminating in a performance for family and friends

When: January 20th – 22nd, 10am to 1pm.

Price: $10 for the 3 days (Highly subsidised and cheap as chips)

Enquiries please phone: 9724 6077 or email Matt matt@pyt.com.au

To register now download, complete and return the registration form to Powerhouse Youth Theatre.

Newcastle: Up Club for kids

Newcastle Temporary Care has a new group providing a social activities for children with Down syndrome. They’ve chosen the name Up Club, but this one is for kids.

• The group is for primary school aged children, with Down syndrome, in the Year 3 to Year 6 age range.
• Participants need to meet the eligibility criteria of Newcastle Temporary Care Ltd. and apply to become clients of the service (if not so already)
• The programme will run on one Saturday a month during school terms
• Activities will vary from month to month and may include activities like bowling, theatre, picnics, bus trips etc. Activity ideas from parents and participants will be encouraged!
• Costs will vary depending on the monthly activity.

Christmas Outing to Dizzyland! (Sat 12 Dec) – The group will travel up to Dizzyland (Port Stephens) for a great day of fun! Cost will be $20.00

For further information, and to RSVP for the picnic, contact: Elizabeth Hyslop on 4957 5008 or 4956 2977 or tempcare@bigpond.com

Dance for Down Syndrome is a new organisation, launched in Sydney this week.

The D4DS Dance-A-Thon will be held over two weeks in March/April 2010 leading up to and around World Down Syndrome Day on March 21st.

Schools are invited to join in the Dance-A-Thon. The date and time can be at the school’s convenience within those 2 weeks. Any type of school, public or private, mainstream or special, dance school or music school, day care centre, preschool or university, can participate.

See the Dance 4 Down Syndrome website, www.dance4downsyndrome.com.au, for more information about the 2010 Dance-a-thon, and the D4DS organisation.

An Afternoon of Fashion

An awareness event and fundraiser for Down Syndrome NSW
Fashion by Leila Sweeney

3.00 pm Sunday 13th December
Walcha Sports Club

Walcha, NSW

Tickets $15
For further information and tickets, contact Sonya, on 6777 2896

Free event to launch Pacific Jewel will benefit Special Olympics and the Leukaemia Foundation

On Saturday, 12th December 2009, P&O Cruises will be launching their latest cruise ship, the Pacific Jewel. To celebrate the arrival of Sydney's latest superliner, P&O have organised a massive South Pacific Christmas Festival.

This festival will be a fun, family event which will feature an amazing range of live entertainment, that includes IDOL Winners Stan Walker and Wes Carr, a visit from Santa, face-painting, aerial circus displays and fireworks!

Event: ‘South Pacific Christmas Festival’ welcoming Pacific Jewel
When: Saturday, 12 December 2009
Where: Overseas Passenger Terminal Forecourt, Circular Quay, Sydney
Time: 5pm – 9.30pm

This event will be a free public event, so make sure you tell your family and friends and get out and support this great FREE family night out!

All proceeds from the event go to Special Olympics and the Leukemia Foundation

Click here to download a flyer

Source: Special Olympics

Up, Up and Away DVD and manual launched

The beautiful Sydney Opera House was a spectacular venue in which to celebrate the launch of the DVD and Project Manual developed by the Up, Up and Away Project .


The package documents the Project’s progress, stages and success, and makes it available to others to implement in the broader community.
Prof Derek Armstrong, Pro-Vice Chancellor of the University of Sydney described the DVD as ….. such an uplifting, inspiring and joyful video... the video and the young educators project just shows that people with disabilities have so much to teach society... to teach university students.

In acknowledging the participants, Miriam Stevenson, the first Project Coordinator said that “….their overwhelming message was we want we want to work, we want to participate, and we want to make a contribution.

“Our young people express the need for friendship and connection ...... sincerely, ..... clearly.” Concepts such as Up, Up and Away “.... can operate so that the person at the centre can make plans, develop their skills, build friendships and get their lives going in the direction they want it to go.”

The Up, Up and Away Circles of Support Guidance Manual and DVD package is available to purchase form DS NSW for $59.95 – contact Angela Adams on 9841 4409, admin@dsansw.org.au or click here to download an order form. The DVD alone can be purchased for $22.

Australian Government to Consider New Approaches to Disability

The Australian Government's media release on the Productivity Commission inquiry into the delivery of disability services announced on Monday is available online here. It reads in part:

The inquiry forms part of the Australian Government's ten year National Disability Strategy being developed with State and Territory Governments and in consultation with the National People with Disabilities and Carer Council.

The Productivity Commission inquiry will examine the feasibility, costs and benefits of replacing the current system of disability services with a new approach which provides long-term essential care and support for people with severe or profound disabilities however acquired.
The inquiry will examine a range of options for long-term care and support including consideration of whether a no-fault social insurance approach to disability is appropriate in Australia. It will also examine if a scheme would fit with Australia's health, aged care, income support and injury insurance systems.

These are complex issues that require rigorous analysis, design and costing. The feasibility study will assess whether a long-term care and support scheme would be appropriate, practical and economically responsible in the Australian context.

The Productivity Commission will consult widely and will be assisted by an associate commissioner with specialist disability expertise. An independent panel of experts will also be established to advise the Productivity Commission and Government during the Inquiry. The Australian Government will appoint the associate commissioner and the independent panel of experts shortly.

The Productivity Commission will report to Government in July 2011.

Library Thursdays: Other libraries of interest

We like to think that our library has a great collection of materials pertaining to Down syndrome. However, it is not our focus (or within our budget) to be able to provide every material you may want from the broader areas of disability, inclusion, learning support. Fortunately, there are some great libraries out there that you can access.

The NSW Department of Education and Training and the Sherlock family set up the Jill Sherlock Memorial Learning Assistance Library in memory of Jill Sherlock who was a support teacher in Western Sydney. It has resources to help students with learning difficulties. The catalogue is online and you can also pose a question for the librarian via the web. Teachers as well as parents can join the library at no cost.

Another useful library if you need resources on inclusion, is the FamilyAdvocacy Inclusion Collection. Family Advocacy supports families of people with an intellectual disability. The collection provides resources with the aim to "support and inspire" and articles and videos have practical examples of how people with intellectual disabilities can be included in the community. A reading room highlights the latest resources. (A few articles on self managed community participation.) Resources can be searched for online. Articles from the library are emailed at no cost or they and other resources can be mailed with just postage charges.

The NSW Council for Intellectual Disabilities in Surry Hills have a reference library, the Jim McLoughlin Reference Library which is open to people with intellectual disabilities and their families and carers plus others who are interested. The catalogue is not online, but you can send a request for information from their website. The library can be accessed Monday to Friday 10-4 by appointment.

The Nepean Area Disabilites Organisation have a Specialist Disability Information Library. It is lo

cated in Penrith and is open to anyone who wants to join for a small fee. Their catalogue is available to search and reserve items online. The collection has a wide range of resources relating to information about various disabilities, therapies, support, and services.

Of course, we hope that most of the time you will find what you need in our library. Members may borrow resources for 4 weeks and may renew if necessary. To obtain resources, call or email us with specific requests or ask our advice. Resources can be picked up from the library or we will mail them out to you. You are responsible for returning them on time so that others may access them. Donations to help with postage costs are welcome. Non-members may come into our offices to use the materials Monday to Friday 10-4. Information is also available from our website as well as by phone.

Fun and games ..... more from Families Weekend

It wasn't all high flying, speed and action at Families Weekend. There was some seriously good face-painting on offer too .......

You had to still really still ......


..... but it was soooo worth it!

Kingsdene students visit Parliament

Return of the forgotten children
Mark Wetherall,
Sydney Morning Herald, November 24, 2009

Just getting the six children from Sydney's Kingsdene School to question time in Canberra was a triumph over chaos.

They had come to Parliament House to make a case for the special treatment which the Government had refused to maintain.

The children are profoundly disabled. Shepherded by parents, siblings and helpers, they whooped and rambled their way through the corridors of power.

''Some of the kids behaved in ways that would emphasise the need for Kingsdene,'' said one parent, Mary Lou Carter, whose son, Nicholas, she says has developed extraordinarily well because of the school.

Read the full story here.

Feasibility study on NDIS announced

The 7.30 Report (ABC TV) reported the Federal Government's announcement of the Productivity Commission's feasibility study of a National Disability Insurance Scheme last night Click here for the TV report.

Other media:

Insurance scheme may allow lifetime care for disabled
Mark Davis, National Editor
Sydney Morning Herald, 24/11/2009

The Federal Government will consider introducing a Medicare-style national insurance scheme to provide lifetime medical treatment and care for people with serious disabilities.

The Prime Minister, Kevin Rudd, announced last night that the Government would conduct a feasibility study into ways to fund and deliver long-term care for severely and profoundly disabled people who needed daily help.

The Productivity Commission will be asked to examine a social insurance model, which could be funded by a levy across the whole population, to care for those born with severe disabilities and those who become disabled in accidents.

Mr Rudd said the inquiry would examine the costs and benefits of replacing the existing system of disability services with an approach that would provide long-term essential care and support, no matter how people acquired their disability.

Read the full story here.

Links to media on the announcement is gathered on the "News" page of the National Disability Insurance Scheme campaign website.

Flying high .......

This year's Families Weekend was held at The Tops, Stanwell Tops, overlooking the ocean from the edge of the Illawarra escarpment. The spectacular views provide a stunning background to the adventure activities available at The Tops. It was an active weekend!

The Giant Swing was breathtaking but everyone came off the swing with beaming faces and a huge sense of achievement. Many people of all ages wanted to have a go, even if they were a bit anxious. Once they were up and flying, it was an adrenaline rush and many wanted to come back for more!

DS NSW Annual Report

Our Annual General Meeting was held on Saturday (21st November), at our new office.

The balloons were to let people know they had the right address, since it doesn't really look like an office (one of the nice things about it) - we enjoy our work, but it isn't a party every day.

Our Annual Report for 2008 - 2009 is now available online here, or you can request a print copy from our office - admin@dsansw.org.au

One year of counting ......

It is one year today since we added a counter to this blog, wondering of course if anyone was reading. Apparently they are. 18,188 individual visits had been recorded by early this morning, mostly from within Australia, as expected, but a few from elsewhere. Traffic has doubled since the first full month of counting, and still rising.

Feel free to comment (although like any blog we've attracted the odd random, totally unrelated spam comments which have been removed), and let us know what works, and what doesn't.

Thanks for reading.

Glee, episode 9

So what did you think about the storyline involving "Becky" and "Jean", both characters who have Down syndrome, in last night's episode of Glee?

One 19 yr old sibling of our acquaintance thought it was fantastic (she is a Glee fan - apparently known as a Gleek !) and was touched by the twist that introduced Jean. She said it was not "cheesy", and that it was respectful. Her brother who has Down syndrome was too busy to watch it.

If you missed the episode, you can catch it here.

Now that's a Circle of Support!

Sophie brought her family along to Buddy Walk - Australia 2009 in Newcastle last month. It was a beautiful day in a beautiful setting. Some of the blue through the trees is the water of Newcastle Harbour. There was entertainment, fine food, and a lovely walk along the Harbour foreshores.

The event was very well organised, and will grow - the Lord Mayor of Newcastle has "adopted" it, promising ongoing support. Well done all round - a very enjoyable day.

Access All Areas Film Festival November 16 to December 3

Access All Areas Film Festival visits venues across NSW from November 16 to December 3 2009, featuring free screenings of acclaimed Australian films, which will be made accessible to people with disability.

This unique event is accessible to all with free entry to all screenings and special accessibility services for those who need them. All films will be audio-described for people with a vision impairment where on-screen action is described in between dialogue and transmitted to an individual audio receiver (provided by the festival), captioned for the hearing impaired and wheelchair accessible. Screening intros, panels and Q&A’s will be Auslan interpreted. Bookings essential for access services, please call the Festival office on 02 9281 5608 to make your booking.

Access All Areas Film Festival is a flagship event of the 2009 Don’t DIS my ABILITY campaign to celebrate International Day of People with a Disability. Tickets are available from the box office 30 minutes prior to the start of the screening, subject to availability it is recommended to book in advance by calling the Festival office on 02 9281 5608.

For the full program of events, visit www.accessallareasfilmfestival.com.au.

Expert commentary on Stanford research

The Stanford Down Syndrome research Center's study into brain function in a mouse model for Down syndrome (published yesterday) is being reported by media worldwide.

ABC radio's The World Today covered the news yesterday, interviewing Dr Ahmad Salehi from Stanford, and with comments from Dr Bill Warren from James Cook University. Click here for a transcript and a link to the audiofile to replay the segment.

Science News: Interview with Prof William Mobley (former Director of the Stanford Down Syndrome Research Center, now at San Diego, and one of the co-authors):

Science Now: summary of the research study concludes with this comment from another highly respected scientist working in Down syndrome research ....

"It's a very positive development," says Roger Reeves, a geneticist at Johns Hopkins University in Baltimore, Maryland. He notes that other recent rodent studies have suggested that drugs that target the neurotransmitter GABA, among others, may also help improve cognition in Down syndrome. Although some researchers have begun to test such cognitive-enhancing drugs in people with Down syndrome, Reeves says the studies to date have been small and fraught with methodological problems, so he doesn't consider them to be reliable. Even so, he says, "5 years ago I never would have believed we would be looking at this kind of fundamental therapy for Down syndrome."

Reference for the original research paper:

Salehi, A. et al, Restoration of Norepinephrine-Modulated Contextual Memory in a Mouse Model of Down Syndrome, Science Translational Medicine, 18 November 2009: Vol. 1, Issue 7, pp. 7 - 17 (DOI: 10.1126/scitranslmed.3000258)

The abstract is available online here, with links to purchase options for the full text of the article and supplementary material. The cover image represents Trisomy 21.

The full text will be freely available online one year after publication.

UK article about Stanford research

And here's a British news article from Times.online about the Stanford research released today, with what would have to be one of the cutest pictures of a baby/toddler with Down syndrome you've ever seen.

New brain research report from Stanford

An interesting new research study on particular brain functions in mouse models of Down syndrome has been released by the Down Syndrome Research Center at the Stanford University School of Medicine, in California. The work builds on earlier studies, and the researchers caution that it is a long way from a clinical application, and is not a "cure" for Down syndrome:

This research has revealed another potential therapeutic strategy to improve learning in a mouse model of Down syndrome. As you can read in the article ..... these findings are very promising. However, we would like to emphasize that these studies were done in a mouse model and more work is required before commencing clinical trials in humans.

But it is interesting science, from a highly regarded center, that might well be useful for people with Down syndrome in the future.

Library Thursdays: Booklets from DSA UK online

The Down's Syndrome Association in the UK has a variety of booklets on all aspects of Down syndrome. These are available to look at online in PDF format.

Topics include:

• Managing sleep problems in children with Down's syndrome
• Information on teaching numeracy and mathematics to students with Down syndrome
• Information on teaching reading to students with Down syndrome
• Notes for teachers on behaviour
• Bereavement
• Thyroid disorder among people with Down syndrome (for parents)
• Thyroid disorder among people with Down syndrome (for doctors)
• Eye problems in children with Down syndrome
• Top 20 questions about speech, language and communication for children with Down syndrome
• Down's syndrome and childhood deafness

There are many more. To look at any of these and the rest, click here and select the area of interest. If you have any trouble accessing them, let us know as we have copies available in the library or go to DSA UK's home page and look under Resources and Publications.

Hope some of you can come along to the AGM this weekend, have a look at the library and borrow something. If you can't make it on Saturday, you can still borrow. Have a look at the library lists and then just email us and we'll send it out to you.