Events in April 2013

Playing to their strengths
Down Syndrome NSW event
3rd April 2013
Rosehill

The Man Who Planted Trees
Access Performance, recommended for children 7+
Saturday 6 April, 11am
Sydney Opera House

'It's all about me' workshops  

Disability Support Organisation for the Hunter events
Charlestown   Wednesday 3 April
Maitland   Tuesday, 9 April
Waratah   Wednesday, 10 April


NDIS Practical Design Fund Project: 2 day workshops
Designed for people with disability, families and support workers; delivered by Future by Design
Newcastle  9-10 April 2013 
Kogarah  11-12 April 2013
Wollongong  15-16 April 2013

The role of paid support: how to enrich someone’s life

Resourcing Families event
Newcastle
11 April 2013

Arabic speaking parents network

Coordinated by ADHC
Mascot
19th April 2013

Puberty, sexuality and relationships: workshop for parents
Family Planning NSW event
Lismore
22nd April 2013


PATH and Graphic Facilitation: workshop for professionals
Centre for Disability Studies event
University of Sydney, Camperdown
22nd - 23rd April 2013


Working together to build social connections: workshop for people with disabilities and community support workers
Centre for Disability Studies event
University of Sydney, Camperdown
24th April 2013

Sutherland Shire and St George school holiday meet-up
Down Syndrome NSW event
28th April 2013
Caringbah

Working together to build social connections: workshop for people with disabilities and community support workers

The Centre for Disability Studies presents a collaborative workshop for support staff and people with
disabilities:

This workshop will take up the challenge of supporting people to lead lives that includes fulfillment
through being connected with others in their surrounding communities. Support staff are encouraged to invite a person with disability to join them to attend the workshop where together they will explore increased opportunities to socially connect with their local communities. 

Wednesday 24th April 2013

Auditorium (ground floor, accessible from outside courtyard)
Medical Foundation Building, 92-94 Parramatta Road
Camperdown

$160 + GST for staff and $20 + GST per person with disability

Contact for further information, flier and registration:

Margaret Carrick  Phone: (02) 9036 3600 Fax: (02) 9036 3613
Email: margaret.carrick@sydney.edu.au

Weekend reading and viewing 30th - 31st March 2013

A meaningful job; A proud employee
Nicholas Popowich, VATTA blog (Canadian Down Syndrome Society), 26th March 2013

I am proud to be an employee of SaskTel ... I got my job in 2010 out of a summer placement. It began when the Saskatchewan Abilities Council had a program to help find jobs for students with disabilities coming out of high school. That summer job turned into a regular job that keeps me working every day for four hours per day.

The lesson I learned again, the day I cried in my car
Suzanne Perryman, Special Needs Mom (blog), 23rd March, 2013. I was excited to tour the classroom- until I did. Immediately I knew Zoe’s “ team” had underestimated her abilities. I left the school stunned, set out to do my own research, and found the right environment for her in which she has thrived for the last six years.

Teen with Down syndrome tackles Everest
Today, NBC, 25th March 2013
Eli Reimer, 15, has made history doing something many adults would find difficult: hiking to the base of the highest mountain in the world, Mount Everest, becoming the first American with Down syndrome to complete the climb.

Down syndrome advocates call for justice, training
Maureen Wallace, SheKnows.com, 27th March 2013 
In the wake of the death of Robert Ethan Saylor, (US) national and local Down syndrome organizations are calling for awareness and action. But which rally cry will succeed — and which reflects what families of individuals with Down syndrome want from their national organizations?
“Ethan” Saylor had Down syndrome and died after being restrained by three off-duty Frederick County, Maryland, Sheriff’s deputies. While the coroner ruled Saylor’s death a homicide, a grand jury declined to indict the deputies.

A Generational Shift in Understanding Life With Down Syndrome
Theo Malekin, The Atlantic, 27th March 2013 ... the head of the pediatric intensive care unit where Hazel spent her first month of life had a positive outlook on children with Down Syndrome. I remember him telling us not to place limits on what she could do, his relief when it became clear we were committed to our daughter. You see, old attitudes persist.

Naming values, and the values of names
Robbie Williams, Purple Orange, 27th March 2013

On the NDIS being renamed Disability Care ... the only way the use of the word 'care' could be less unacceptable would be if it were applied to every Commonwealth government department, for example the Department of Infrastructure and Transport Care, the Department of Prime Minister and Cabinet Care, the Department of Foreign Affairs and Trade Care etc.

The Scrappers are on their way to Comeroo ...

 ... ride safe, and enjoy!

• Scrapheap Adventure Ride 2013 on Facebook - some pictures from Bathurst and Nyngan are up already! Make sure you check out 'Posts by others' to see some of the preparations.

• Scrapheap Adventure Ride 2013 website for news and to sponsor

World Down Syndrome day in northern NSW

 Olivia has it all covered, ready to celebrate World Down Syndrome Day on 21st March, with the the DSi 'lots of socks' theme, and Harmony Day with a Pacific Island theme, at Gulmarrad Public School.

Jenny Dowell, Mayor of Lismore, Jodie Mills (22), Trish Mills, Krystal Cottam with Kayleigh (5 months) and Kerry Smith with Lachlan (3) ... were a small part of the happy crowd of 40 people who came to Trish's T4321 coffee morning in Lismore last week, to celebrate World Down Syndrome Day

Your World Down Syndrome Day / T4321photos are welcome - please send them to blogeditor@dsansw.org.au, or to admin@dsansw.org.au

Down Syndrome NSW library ...

Okay, so the DS NSW library is not really this big ...
Cornell University Library - public domain image sourced from Pixabay

... will be closed for 4 weeks.

As our office is about to move, the Library will be closed for 4 weeks while we pack, move and unpack the library. There will be no new loans. Loan extensions may be granted by contacting Jo via email: library@dsansw.org.au

Please return overdue items. Members who have unreturned overdue items will be expected to replace the item/s or pay for replacement copies.

Arabic speaking parents network: Eastern suburbs

Would you be interested to have contact with other parents who have children with special needs

Friday 19th April 2013
10.30 am - 12.30 pm
Suite 3, 1 Elizabeth Ave Mascot

• Arabic bilingual facilitator

Representatives from local services and, and opportunities for discussion about parenting, support, behaviours, developmental stages, supporting your child's development, services - what interests you.

Contact for more details: Inja Stacenski on 02 9662 7627 or Rosetta Kai Sung on 02 8344 2700

• Click here to download the flier in Arabic and English

Beyond the Square: Artspace 2013 exhibition opportunity

In 2013 Riverside Theatre and Beyond the Square are again opening up TWO opportunities for artists who identify as having disability to have their works exhibited in the foyer exhibition space at Riverside Theatres. Artists within their first 5 years of practice are strongly encouraged to apply.

Artspace welcomes the submission of artwork that is able to be hung, eg painting, drawings, animation, photography, mixed media.  

• Works must have been created after January 2011
• Artists must identify as having disability.
• Artists who have applied in the past and were unsuccessful are encouraged to apply again.

All applications must be accompanied by a maximum of 3 images and be received by email or post by 5pm Monday May 6th, 2013

(Almost) Wordless Wednesday: twins

What’s happening this Easter?

Well it’s that time of the year again when a bunch of generous and committed people drag old bikes out of the sheds, prepare them and get ready for another long ride in the red dust on the 2013 Scrapheap Adventure Ride - Back 'O' Bourke, 29th - 30th March 2013

This is the fourth event I have run to raise awareness and much needed funds for Down Syndrome NSW and in that time, Scrapheap Riders have raised over $150,000!!!

Your support has been greatly appreciated over the previous three Scrapheap Adventure Rides and this year is shaping up to be another cracker!!!

We have been blessed by everyone’s generosity and we would appreciate your support again this year.

To sponsor, please click this link and either sponsor a rider or donate to the cause.

Perry Gilsenan

Research news update #2 for 2013

Unraveling the molecular roots of Down syndrome
Heather Buschman, Beaker (Sanford-Burnham Science blog), 24th March 2013
What is it about the extra chromosome inherited in Down syndrome—chromosome 21—that alters brain and body development? Researchers have new evidence that points to a protein called sorting nexin 27, or SNX27. SNX27 production is inhibited by a molecule encoded on chromosome 21. 

Australian Down syndrome clinical study: Cognition and memory in people with Down syndrome
'A Phase 1b, Double-blind, Randomized, Placebo-Controlled, Parallel Group Study of the Safety, Tolerability, Preliminary Efficacy and Pharmacodynamics of BTD-001 in Young Adults and Adolescents with Down Syndrome'

Artist: Michael Jurogue Johnson

25th March 2013
Enrolling participants with Down syndrome aged 13 to 35 years old in Adelaide, Launceston, Melbourne, Perth, Sydney, and Wollongong. Sites in other locations are planned. Study site location information will be updated as it becomes available. Contacts in Victoria, South Australia and Western Australia are currently available on the study's website.
Monash University trial to test if cough mixture ingredient could help Down syndrome, Lucie Van Den Berg, news.com.au 25th March 2013

Down Syndrome Cognition Research 101: An Introduction
Down Syndrome Research and Treatment Foundation - World Down Syndrome Day Webinar, 21st March 2013
Scientists used to think Down syndrome was too complex a condition to treat. But thanks to the enormous strides researchers have made in the past decade, we now believe that it's not only possible to improve cognition through drug treatment, but that "we should look with real hope on the near future," as one leader in the field says — that the goal of improved learning, memory, and speech for people with DS may be within reach.

Study finds flashcards can help to teach spoken vocabulary

Down Syndrome Education International, March 2013
A research study, recently published in the Journal of Child Language, has reported that children with Down syndrome can benefit from the use of written words alongside pictures to help teach spoken vocabulary.

Down syndrome groups participate in Roche Advisory Board
Down Syndrome Education International, 12th March 2013
Earlier this week, DSE joined Down syndrome groups from around the world to discuss recent advances in research and clinical trials of pharmaceutical therapies that may improve learning and memory for people with Down syndrome.

Researcher finds exercise may be intervention for Down syndrome,
Sarah Auffret, Medical Xpress, 6th March 2013
Shannon D.R. Ringenbach, an associate professor of kinesiology in the School of Nutrition and Health Promotion, hopes to show that Assisted Cycle Therapy has the potential to improve the lives of people with DS. She has received a $150,000 grant from the Eunice Shriver National Institute of Child Health and Human Development to conduct the study.

Roche Research Sheds Light on Improving Neurological Deficits in Mouse Model of Down Syndrome, PharmaLive, 27th February 2013

Roche scientists, along with scientists at the University of Cantabria and Spain’s Cajal Institute, report findings in the Journal of Neurosciencea, which demonstrate that by selectively blocking specific receptors in the brain they were able to reverse key neurological deficits in a mouse model of Down syndrome (the Ts65Dn mouse). 

Lithium Improves Cognition in Down Syndrome Animal Model: Is It Viable for Human Trials?
Tom Valeo, Neurology Today, Volume 13 - Issue 4 - p 6–7  21st February 2013
doi: 10.1097/01.NT.0000427571.74729.3e
Lithium seemed to improve memory and cognition in an animal model of Down syndrome. But several commentators noted that although the results are encouraging, safety concerns with lithium need to be addressed before applying to human trials of Down syndrome.

Mamre Magic: Try new things day

A day of activities for people of all ages and abilities in the magical rural setting of Mamre House at St Marys

Thursday, March 28, 2013
All welcome to join in the fun and have a go at something new.

The cost is $15 per person for 3 activities and a light lunch can be pre ordered for $8

To make a booking please phone 9670 5321. Booking is essential.

Click here for program

Puberty, Sexuality and Relationships: FREE forum for parents and carers of children and young people with intellectual disability in Lismore

These free forums are very popular:

Find out how to support your family member’s personal development and sexuality in a positive way.

• Issues around sexuality and disability
• Tips for talking about sex and answering tricky questions
• Preparing for puberty changes
• Decision making and safety
• Books, DVDs and resources
• Experienced presenters to answer your questions
• Meet other parents
• Free resource bag

Parents, foster parents, relatives and other unpaid carers of people with disability are welcome. This forum is not intended for service providers (please contact Family Planning NSW for information regarding professional education). We regret we are unable to provide respite/ childcare.

6.00 pm - 8.00 pm, 22 April 2013

Multitask, 296 Molesworth Street, Lismore NSW 2480

For more information or to register contact Danielle Fehir, Family Planning NSW T: 02 8752 4388  F: 02 8752 4396 E: daniellef@fpnsw.org.au

Go to the Family Planning NSW website for updates and further information

Weekend reading and viewing: 23rd - 24th March 2013

Carrie Bergeron - Advocate and Motivational Speaker, VeccVideography, posted on Vimeo 8th March 2013. Carrie  Bergeron is a 36 year old woman with Down Syndrome who has made it her life's work to give back to a community that supported her through her early years. Dr Brian Chicoine, Director of the Adult Down Syndrome Clinic in Chicago, wrote in introducing the video on the Clinic's Facebook page ... 'From time to time I get asked what I do to promote people with Down syndrome. My answer is, "That isn't my job. My job is to help people with Down syndrome be as healthy as possible so they can optimally speak for themselves". It is not only the right thing to do, but people with Down syndrome can promote themselves better than I can ... through words, dance, actions, kindness, or however their gifts are expressed.' 8m 49s

Thin Places, Amy Julia Becker, 14th - 21st March 2013.  Amy Julia Becker presents a series of posts, some written by guest bloggers around the globe, to mark World Down Syndrome Day this week.

A young man with Down syndrome, a fatal encounter and a cry for understanding, Lawrence Downes, New York Times, 18th March 2013. You may not have heard of Robert Ethan Saylor, but his death in January should inspire something more lasting than a small-town police investigation.

Acceptance, Jennifer Crowson, Down Syndrome Research Foundation (blog), 15th March 2013 What do you say to people who see you are pregnant and congratulate you and talk about how excited you must be – when actually you are still coming to terms with being told your baby will not be what you expected? I think every parent does and should handle this in his or her own way; here is how I came to accept and embrace the fact that our son had Down syndrome.

Take off the blindfold, Paula Kluth, paulakluth.com, 16th March 2013 Disability awareness lessons done right can help teachers do this. Unfortunately, most disability awareness activities are not done right. (Third on a series on inclusion in school)

DisabilityCare: a bad name but a good direction, Stella Young, Ramp Up, 22nd March 2013. The NDIS will now be known as DisabilityCare. It's a terrible name, but at least we are now on the path to providing better services for Australians with disabilities
PWDA E-Bulletin, Edition #82, People With Disability Australia, 15th March 2013. Highlights for this March E-Bulletin include the four social media forums run by the PWDA Board, which fed into policy responses on the NDIS legislation, the NDIS rules, a review of the NSW Disability Services Act and employment issues.

Scrapheap Adventure Ride 2013: one week to go!

The 2013 Scrappers are just about ready ... they will arrive at Comeroo Station (out the back of Bourke) on Friday 29th and Saturday 30th March, just a week away.  They will be welcomed in the towns and regions they ride through, and will spread awareness about people with Down syndrome as they cross NSW.

They have spent months preparing their bikes, planning the trip and setting up fund-raising activities - you can support them by sponsoring  one or more teams here. The total raised so far is nudging $25,000 !

Here are a couple of the guys featured on the Scrapheap Adventure Ride 2013 Facebook page this week - like the page to keep up with final preparations and to follow the great ride:

Mike Harding with the '99% ready' PE400

Mark Victor plans to ride up to Comeroo from Bendigo!

And remember, this Sunday you can support the 2013 Scrapheap Adventure Ride in the comfort of the North Manly Bowling Club, without having to build a bike, or trek to outback NSW!

Aging and Down syndrome: a health and wellbeing video and guidebook

On 19th March, the (US) National Down Syndrome Society, based in New York presented its monthly webinar - the topic was Aging and Down syndrome, presented by Dr Julie Moran, a geriatrician specializing in older adults with intellectual and developmental disabilities (I/DD). Dr. Moran is on faculty at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, MA.

The webinar can be viewed online here (1 h 2m 28s).  Links are also provided to the slides from the presentation, and to view the new NDSS publication Aging and Down syndrome: a health and wellbeing guidebook, by Julie Moran DO.

Sen Jan McLucas on World Down Syndrome Day and the NDIS becoming law today

Joining in the celebrations for World Down Syndrome Day

Media release, 21 March 2013

Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas is today celebrating World Down Syndrome Day.

World Down Syndrome Day, held on 21 March each year, is a United Nations sanctioned day which provides an opportunity for people to learn more about Down syndrome and to recognise the contribution people with Down syndrome make in our society.

Senator McLucas said that today was a great opportunity for people in Australia—and beyond—to take the time to become more aware about Down syndrome.

“World Down Syndrome Day is a time to recognise and celebrate the contributions people with Down syndrome make to our community,” Senator McLucas said.

...  “In a truly historic moment, the NDIS Bill has passed the House of Representatives with a unanimous vote, and has this morning passed into law.

“The National Disability Insurance Scheme Bill brings us one step closer to ensuring that all Australians have the support they need to reach their full potential.”

World Down Syndrome Day: launch of Down Syndrome Australia website

Down Syndrome Australia was formed in 2011 by the eight State and Territory Down syndrome associations to provide a strong united voice to address the needs and aspirations of people with Down syndrome and those that support them..

The Down Syndrome Australia website launch was timed for World Down Syndrome Day 2013 - we look forward to its continued development, and greater access to collaboration, information and support on issues of national importance ...

The website will also link to each state and territory Down Syndrome association website, ensuring people with Down syndrome and their families stay in touch with local news and events. Further features will be added to the DSA website over the coming months.

• Down Syndrome Australia on Facebook

Have a memorable World Down Syndrome Day, however you chose to celebrate or acknowledge it. ... your photos from WDS Day 2013 events are welcome, if you would care to share them.  Please send them to blogeditor@dsansw.org.au

Some international events will not happen until tomorrow, Australian time:

• The second UN World Down Syndrome Day Conference 2013 will be live streamed from New York
• A room of golden shells: 100 works by artists and writers with Down syndrome, edited and published by Woodbine House will be launched in the US. Woodbine House does accept orders from individuals inAustralia, but the book is listed for pre-order at The Book Depository.

Survey: What will make the NDIS work best in rural and remote areas?

People With Disability Australia, the National Disability and Carers Alliance (NDCA) and the National Rural Health Alliance want to find out “What will make the National Disability Insurance Scheme work best in rural and remote areas?”

© Ilia Torlin | Dreamstime.com

• You can participate by completing the online survey.

• Discussion paper on Issues relating to the NDIS in rural and remote areas of Australia, released by the National Rural Health Alliance 21st February 2013. Feedback is invited via comments to nrha@ruralhealth.org.au

T4321 events around NSW ... you're welcome!

You know that Thursday 21st March (that's tomorrow!) is World Down Syndrome Day ... people across NSW will gather over the next few days to celebrate the people with Down syndrome in their lives and communities over morning/afternoon tea.  The organisers of these events have asked us to issue an invitation to all ... let us know if you would like your event listed here, or on our Facebook page (email blogeditor@dsansw.org.au)

Christian Swan's T4321

Date: Friday 22^nd March

Time: 10:30am

Location: 21 LillyPilly Close, Medowie NSW

North Coast T4321

Date: Thursday 21^st March

Time: 10:00am

Location: Multitask Molesworth at Lismore

AGD T4321

Date: Thursday 21^st March

Time: 10:00am

Location: Attorney-General’s Department
3-5 National Circuit, Barton ACT

Let’s have some fun for T4321

Date: Wednesday 20^th March

Time: 12:00pm

Location: Lifestart Nepean

Maree’s T4321

Date: Thursday 21^st March

Time: 8:45am

Location: St Joseph the Worker Primary School- Auburn

Contact Priscilla at Down Syndrome NSW on 02 9841 4404 or 0402 503 885 or Priscilla@dsansw.org.au with any enquiries.