This short Italian video has met with a very positive response across the internet over the last few days:
Tuesday, 18 March 2014
Performance arts events
2 new contemporary dance works-in-progress by Rob McCredie and Sarah-Vyne Vassallo7pm Friday 21 March and Saturday 22 March 2014
A Beyond the Square project, at the Sydney Comedy Festival
6pm Sunday 4th May 2014
Monday, 17 March 2014
Trevor Parmenter Annual Lecture: Prof Matthew Janicki
Matthew P. Janicki, is research associate professor of human development at the Institute of Disability and Human Development at the University of Illinois at Chicago and an Adjunct Professor at the School of Rural Medicine at the University of New England.
Currently he serves as the co-chair of the National Task Group on Intellectual Disability to Dementia Practices in the USA.
Tuesday, 8th April 2014
Lecture 6pm – 7pm followed by light refreshments
Camperdown
No charge, however bookings are essential
RSVP: By Wednesday 2nd April 2014
In celebration of World Down Syndrome Day (4) ...
21 Portraits
A Facebook album of 21 beautiful black and white portraits of people with Down syndrome, by photographer Anna Jurkovskai.
Published in celebration of World Down Syndrome Day the Down Syndrome Association of Latvia.
A Facebook album of 21 beautiful black and white portraits of people with Down syndrome, by photographer Anna Jurkovskai.Published in celebration of World Down Syndrome Day the Down Syndrome Association of Latvia.
Friday, 14 March 2014
Weekend reading and viewing 15th - 16th March 2014
21 quotes for 21 days
(US) National Down Syndrome Congress, in celebration of World Down Syndrome Day.
Day 13: For a homework assignment explaining Down syndrome, Zachary wrote:
"Down syndrome is a talent, and not everyone has it."
Just a Bit ... Funny
Beyond the Square, 20th February 2014
Check out the video we made for Stage 1 of our Just a Bit .. Funny project! We think it's pretty funny...
Check out the video we made for Stage 1 of our Just a Bit .. Funny project! We think it's pretty funny...
Just a Bit .. Funny will be at the Sydney Comedy Festival on Sunday 4th May at 6pm, at The Factory in Marrickville.
Rape case not just about Down syndrome
How Back to Back challenges the way we see actors with disabilities
Anna Theresa Scheer, The Conversation, 11th March 2014
... Much successful work has been done by disability advocacy groups and national organisations to improve basic rights for people with disabilities, such as the right to employment, full access to transport and venues, and increasing government awareness of disability issues. Still, the status of actors with disabilities remains a work-in-progress in the often elite institution of theatre ...
3 essentials for a great ask
Rape case not just about Down syndrome
David M. Perry, CNN, 11th March 2014
... Jane has Down syndrome and the growing national outrage to this case has focused, with reason, on her disability. But Down syndrome is only part of the story ...
The outrage is not only because this judge didn't understand Down syndrome, but that judges frequently impose their perceptions on cases of sexual assault, reducing sentences even for convicted rapists on the grounds that the victim didn't act "correctly." Jane's troubling case reveals the intersections between rape culture and the way we strip agency from people with disabilities ...
People With Disabilities Impetus For New Teaching Hotel
... Jane has Down syndrome and the growing national outrage to this case has focused, with reason, on her disability. But Down syndrome is only part of the story ...
The outrage is not only because this judge didn't understand Down syndrome, but that judges frequently impose their perceptions on cases of sexual assault, reducing sentences even for convicted rapists on the grounds that the victim didn't act "correctly." Jane's troubling case reveals the intersections between rape culture and the way we strip agency from people with disabilities ...
People With Disabilities Impetus For New Teaching Hotel
Michelle Diament, Disability Scoop, 10th March 2014
Construction is set to begin on a first-of-its-kind hotel where teaching and employing people with disabilities will be just as important as accommodating overnight guests ...
Construction is set to begin on a first-of-its-kind hotel where teaching and employing people with disabilities will be just as important as accommodating overnight guests ...
How Back to Back challenges the way we see actors with disabilities
Anna Theresa Scheer, The Conversation, 11th March 2014
... Much successful work has been done by disability advocacy groups and national organisations to improve basic rights for people with disabilities, such as the right to employment, full access to transport and venues, and increasing government awareness of disability issues. Still, the status of actors with disabilities remains a work-in-progress in the often elite institution of theatre ...
3 essentials for a great ask
Libby Ellis, InCharge, 11th March 2014
We recently held a workshop called Nurturing your Tribe. We were thrilled to find people with disabilities and their families attended with other people they had made an ask of; like becoming a housemate, or a friend whose strengths could help achieve something. We just loved playing a part in nurturing these vital relationships! ...
Disabled not rorting the support pension, Disability Discrimination Commissioner Graeme Innes hits back
Judith Ireland, Sydney Morning Herald, 12th March 2014
Disability Discrimination Commissioner Graeme Innes has hit back at the idea that there are too many people on the disability support pension, slamming claims that the system is being rorted as "completely unhelpful".
In the wake of fresh reports that Australia's spending on the disability support pension is unsustainable, Mr Innes said that there was no crisis with the payment ... "Why would you want to be on DSP? Why would you want live on less than $20,000 a year?" ...
Doctor with disabled son fights deportation
The Others
Samantha Connor, The Stringer, 10th March 2014
When is a home not a home? When it’s an institution.
This week, disability advocates were horrified to discover that the Newcastle Greens, together with the NSW Nurses and Midwives Association, were advocating against the closure of institutions ...
We recently held a workshop called Nurturing your Tribe. We were thrilled to find people with disabilities and their families attended with other people they had made an ask of; like becoming a housemate, or a friend whose strengths could help achieve something. We just loved playing a part in nurturing these vital relationships! ...
Disabled not rorting the support pension, Disability Discrimination Commissioner Graeme Innes hits back
Judith Ireland, Sydney Morning Herald, 12th March 2014
Disability Discrimination Commissioner Graeme Innes has hit back at the idea that there are too many people on the disability support pension, slamming claims that the system is being rorted as "completely unhelpful".
In the wake of fresh reports that Australia's spending on the disability support pension is unsustainable, Mr Innes said that there was no crisis with the payment ... "Why would you want to be on DSP? Why would you want live on less than $20,000 a year?" ...
Doctor with disabled son fights deportation
Kathy Sundstrom, Sunshine Coast Daily, 11th Mar 2014
A Noosaville doctor is fighting to stay in Australia after his middle son, who has intellectual impairment and epilepsy, failed the health assessment component of a permanent visa application ...
A Noosaville doctor is fighting to stay in Australia after his middle son, who has intellectual impairment and epilepsy, failed the health assessment component of a permanent visa application ...
The Others
Samantha Connor, The Stringer, 10th March 2014
When is a home not a home? When it’s an institution.
This week, disability advocates were horrified to discover that the Newcastle Greens, together with the NSW Nurses and Midwives Association, were advocating against the closure of institutions ...
People with Down syndrome in the media
Woman with Down Syndrome Fights for Her Freedom – and Wins
Survey finds school system failing some children with Down Syndrome
Selina Bryan, ABC News, 4th March 2014
... Inadequate fencing and supervision are some of many issues highlighted in an education survey of 30 Tasmanian parents who have children with Down Syndrome. Down Syndrome Tasmania found there were many inconsistencies in the treatment of children with the genetic disorder in the public, private and special school systems ...
Lupita Cano a bold, unique artist - art for the ages
Cathy Free and Nicole Weisensee Egan, People, 7th March 2014
Jenny Hatch wasn't trying to be a hero. She just wanted to live with the family she loved. But while the 29-year-old woman with Down Syndrome was fighting for the right to make her own decisions about where to live and whom to live with, she also created a path for others with disabilities to follow ...
Focus on Oliver Hellowell: Photographer with Down's syndromeDowns Side Up, 28th February 2014
At nearly 18, Oliver is already carving a reputation for himself as a respected wildlife and landscape photographer. The Oliver Hellowell website showcases his unique work which is available for sale. Oliver also has Down's syndrome ...
Aussie model with Down's makes UK debut
Australian Women's Weekly, 25th February 2014
He's just four years old but Julius Panetta is already a modelling veteran with four major fashion campaigns under his adorable belt ...
Jenny Hatch wasn't trying to be a hero. She just wanted to live with the family she loved. But while the 29-year-old woman with Down Syndrome was fighting for the right to make her own decisions about where to live and whom to live with, she also created a path for others with disabilities to follow ...
At nearly 18, Oliver is already carving a reputation for himself as a respected wildlife and landscape photographer. The Oliver Hellowell website showcases his unique work which is available for sale. Oliver also has Down's syndrome ...
Aussie model with Down's makes UK debut
Australian Women's Weekly, 25th February 2014
He's just four years old but Julius Panetta is already a modelling veteran with four major fashion campaigns under his adorable belt ...
Survey finds school system failing some children with Down Syndrome
Selina Bryan, ABC News, 4th March 2014
... Inadequate fencing and supervision are some of many issues highlighted in an education survey of 30 Tasmanian parents who have children with Down Syndrome. Down Syndrome Tasmania found there were many inconsistencies in the treatment of children with the genetic disorder in the public, private and special school systems ...
Lupita Cano a bold, unique artist - art for the ages
Jacquie Peterson,Apostrophe, undated
... Lupita describes her studio in Seattle, Wash., as a happy, warm and friendly place. On a typical day, you’ll find her, smock on, working on her latest piece. A disciplined artist for more than 15 years, Lupita works as many as 18 hours or more per week ...
Actor who cheered those around him
... Lupita describes her studio in Seattle, Wash., as a happy, warm and friendly place. On a typical day, you’ll find her, smock on, working on her latest piece. A disciplined artist for more than 15 years, Lupita works as many as 18 hours or more per week ...
Actor who cheered those around him
Peter Phillips, Dancer/actor 1960 - 2014
Jack Gregory, The Age, 7th March 2014
... Peter's parents had had no hesitation in deciding that, whatever the challenges in raising a child with Down Syndrome might be, they would include him in their family ... One of his favourite poems was Blake's Tyger, tyger burning bright. Peter burned brightly throughout his life.
Same Waves takes off
Emma Murphy, NBN News, 11th January 2014
For children with special needs, participating in team sport can be a stressful and challenging task. But Cooks Hill Surf Lifesaving Club is hoping to change that, with a surf awareness program for children who need a little extra help in the waves – and already it’s struggling to meet demand ...
Jack Gregory, The Age, 7th March 2014
... Peter's parents had had no hesitation in deciding that, whatever the challenges in raising a child with Down Syndrome might be, they would include him in their family ... One of his favourite poems was Blake's Tyger, tyger burning bright. Peter burned brightly throughout his life.
Same Waves takes off
Emma Murphy, NBN News, 11th January 2014
For children with special needs, participating in team sport can be a stressful and challenging task. But Cooks Hill Surf Lifesaving Club is hoping to change that, with a surf awareness program for children who need a little extra help in the waves – and already it’s struggling to meet demand ...
Thursday, 13 March 2014
Good health: on mental health, for direct support workers
- Volume 3, Issue 3 mental health - now available free online here
- Back issues of Service, Support and Success are all here
In celebration of World Down Syndrome Day (3) ...
As the writers suggest, this blog post from the Adult Down Syndrome Clinic provides information about people with Down syndrome appropriate for upper primary/young high school students, in response to a series of question posed by a (US) middle school student.
And you could back it up with the video Just like you - Down syndrome, available freely online and/or for purchase here.
Wednesday, 12 March 2014
Positions available at Down Syndrome NSW
Down Syndrome NSW is seeking
For more information about either position, please contact Scott Bridges at scott.bridges@dsansw.org.au
- a Database/Admin Assistant - see the advertisement here
- a Community Events Co-ordinator - see the advertisement here
For more information about either position, please contact Scott Bridges at scott.bridges@dsansw.org.au
Verve Ensemble, Bankstown - dance, theatre
The participants will be involved in collaborative process that includes skills building and improvisation to develop new contemporary work. Verve will have a particular focus on artist development and the promotion of independent practice for emerging artists with disability.Monthly workshops from Saturday 29th March 2014, 10am – 3pm.
Some dance experience is desirable but not essential. Open to people with and without disability (low to moderate support needs). Registration is essential, numbers will limited
For more information, contact Sarah-Vyne Vassallo or Vandana Ram - Arts Centre Director
P 9707 9989 E vandana.ram@bankstown.nsw.gov.au
Bankstown Arts Centre (wheelchair accessible facility)
5 Olympic Parade, Bankstown
Tuesday, 11 March 2014
News and commentary on the NDIS (17)
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| Click here to read this issue online
National Disability Insurance Scheme News, 7th March 2014
If you missed the recent webinar or would like to revisit the discussion, ‘A Strong Voice: Self-Advocacy’ is now available online. Accessible formats include video, voice, captioning, transcript and Auslan ...
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Harry Belot, The Canberra Times, 28th February 2014
The ACT NDIS Taskforce has released a further $2.4 million of funding to support Canberrans living with disabilities in the latest round of the Enhanced Service Offers, a precursor to the NDIS ...
Rick Morton, The Australian, 27th February 2014
The chief executive of the National Disability Insurance Agency has revealed the organisation has hired consultants to review the “core and critical functions” of the insurance scheme, even as the minister responsible for it assured Senate estimates there would be no changes to funding, scope or delays to the rollout ...
Planning starts for NDIS workforce
NDIS: First experiences (audio file - 21 m)
The chief executive of the National Disability Insurance Agency has revealed the organisation has hired consultants to review the “core and critical functions” of the insurance scheme, even as the minister responsible for it assured Senate estimates there would be no changes to funding, scope or delays to the rollout ...
Planning starts for NDIS workforce
PS News 398, 25th February 2014
A report into workforce issues to help develop a strategy in the lead-up to the introduction of the National Disability Insurance Scheme (NDIS) has been ordered by the Government. National Disability Services (NDS), the peak body for non-government disability service organisations, had been contracted to deliver the report, Assistant Minister for Social Services, Senator Mitch Fifield, said.
Mr Fifield has met representatives of the NDS to identify priority areas ... The Final Report will be delivered to the Government in August 2014 ...
Our new disability scheme is changing lives. Don't let the Liberals destroy it
Jenny Macklin, The Guardian, 24th February 2014
On behalf of thousands of Australians with disability, their families and carers, I have one very simple message for the government: we aren’t turning back ...
A report into workforce issues to help develop a strategy in the lead-up to the introduction of the National Disability Insurance Scheme (NDIS) has been ordered by the Government. National Disability Services (NDS), the peak body for non-government disability service organisations, had been contracted to deliver the report, Assistant Minister for Social Services, Senator Mitch Fifield, said.
Mr Fifield has met representatives of the NDS to identify priority areas ... The Final Report will be delivered to the Government in August 2014 ...
Our new disability scheme is changing lives. Don't let the Liberals destroy it
Jenny Macklin, The Guardian, 24th February 2014
On behalf of thousands of Australians with disability, their families and carers, I have one very simple message for the government: we aren’t turning back ...
NDIS: First experiences (audio file - 21 m)
Life Matters, ABC Radio National, 24th February 2914
What has been the experience of the first users of the NDIS? In July last year four locations across Australia were chosen to host trials of the National Disability Insurance Scheme (NDIS). Life Matters speaks to two mothers, both have disabled children, about what the NDIS has been like for them.
Quality Assurance and Safeguards Working Arrangements for the Launch of the NDIS in New South Wales - As agreed between the Commonwealth of Australia and New South Wales
Quality Assurance and Safeguards Working Arrangements for the Launch of the NDIS in New South Wales - As agreed between the Commonwealth of Australia and New South Wales
The New South Wales Government and the National Disability Insurance Agency have worked to ensure that the strengths of the existing quality assurance and safeguards in New South Wales apply to National Disability Insurance Scheme participants in the Hunter trial.This document, dated October 2013 is now available online, from the NSW Ageing, Disability and Home Care website.
Monday, 10 March 2014
Latest additions to our 'events' pages
High T 4321 - celebrating World Down Syndrome Day
21st March 2014 - State Library of NSW, Sydney
Everyone Connects - connecting people with complex communication needs
Independent Living Centre
20th March 2014 - Wagga Wagga
27th - 28th March 2014 - Ryde
1st May 2014 - Tamworth
How to use advocacy skills to achieve a good life for your family member with developmental disability
21st March 2014 - State Library of NSW, Sydney
Everyone Connects - connecting people with complex communication needs
Independent Living Centre
20th March 2014 - Wagga Wagga
27th - 28th March 2014 - Ryde
1st May 2014 - Tamworth
How to use advocacy skills to achieve a good life for your family member with developmental disability
Family Advocacy workshops
Throughout April 2014 - Coffs Harbour, Newcastle, Penrith, Ryde, Merrylands
Throughout May 2014 - Dubbo, Bathurst, Bateman's Bay, Mittagong
(US) National Down Syndrome Congress annual Convention
11th - 13th July, 2014 - Indianapolis
In celebration of World Down Syndrome Day (2) ...
The (US) National Down Syndrome Congress and Down Syndrome in the Arts and Media have joined to present a quote-a-day from people with Down syndrome, in the lead up to Word Down Syndrome Day on 21st March:
World Down Syndrome Day - 21 quotes in 21 days
Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Day 7
Day 8
Day 9
Day 10
Day 11
Day 12
Day 13
Day 14
Day 15
Day 16
Day 17
Day 18
Day 19
Day 20
Day 21
Follow National Down Syndrome Congress on Facebook to see the link for each day's quote
World Down Syndrome Day - 21 quotes in 21 days
Day 1Day 2
Day 3
Day 4
Day 5
Day 6
Day 7
Day 8
Day 9
Day 10
Day 11
Day 12
Day 13
Day 14
Day 15
Day 16
Day 17
Day 18
Day 19
Day 20
Day 21
Follow National Down Syndrome Congress on Facebook to see the link for each day's quote
Friday, 7 March 2014
Weekend reading and viewing: 8th - 9th March 2014
To The Woman Who Apologized to Me at the Supermarket
Rachel Clarke, Huffington Post (The Blog), 27th February 2014
...We didn't exchange words, just shared in this moment of play and lightheartedness, of finding happiness in connecting with a child ... "I'm sorry," you said and parked your cart next to mine. You sighed, looked at me like you'd just delivered bad news ... "Oh, no, don't be sorry!" I said. But you were already turning your cart, telling the man to follow you ...
Eyes
Dave Hingsburger, Rolling Around in My Head, 1st March 2014
A gentle hand touched the arm of my wheelchair, questioning eyes looked up and me, "Does it still hurt?" she asked, her tone voice conveying that this was a serious and important question. And I, of course, misunderstood it ...
A gentle hand touched the arm of my wheelchair, questioning eyes looked up and me, "Does it still hurt?" she asked, her tone voice conveying that this was a serious and important question. And I, of course, misunderstood it ...
Emily's room
Paul Critchlow, Orange Juice Flavour Sky, 2nd march 2014
What's so different about this room? What makes this room worth writing about? Well, that's the point! It is no different to any other young woman's bedroom ...
This case is shocking. And the judge's reaction is despicable.
Shauna Anderson, mammia, 4th March 2014
It seems in some rape cases you have to actually act like a victim if you’ve been raped ...
My seat on the bus,
Graeme Innes, Howzat?, 4th March 2014
... Seven-year-old Duncan’s parents are worried. He’s about to be suspended from school.... Have you seen situations where a small change can make a big difference?
Shauna Anderson, mammia, 4th March 2014
It seems in some rape cases you have to actually act like a victim if you’ve been raped ...
My seat on the bus,
Graeme Innes, Howzat?, 4th March 2014
... Seven-year-old Duncan’s parents are worried. He’s about to be suspended from school.... Have you seen situations where a small change can make a big difference?
John C McGinley, Huffington Post, 5th march 2014
We are free to express ourselves (in accordance with the law), just about any way that we choose to. I do not enjoy hearing the "R" word: "retard" and "retarded." And I will tell you why...
I Am the Person You Hurt When You Say the R-Word
We are free to express ourselves (in accordance with the law), just about any way that we choose to. I do not enjoy hearing the "R" word: "retard" and "retarded." And I will tell you why...
I Am the Person You Hurt When You Say the R-Word
John Franklin Stephens, Huffington Post, 5th March 2014
Sometimes I feel like Professor Van Helsing, or maybe Buffy the Vampire Slayer. I keep trying to kill this thing and it just won't die. Of course, my nemesis is the "r-word," not a vampire ...
Friends of mine
Trailer of an award winning 2013 documentary
Sometimes I feel like Professor Van Helsing, or maybe Buffy the Vampire Slayer. I keep trying to kill this thing and it just won't die. Of course, my nemesis is the "r-word," not a vampire ...
Friends of mine
Trailer of an award winning 2013 documentary
Thursday, 6 March 2014
'Down Syndrome News' latest issue online
Lead article:
Managing behavior in children with Down syndrome
How Understanding Leads to Intervention: Sociability and Social Skills (Part 3)
Mary Pipan, MD, Clinical Director, Trisomy 21 Program, Children’s Hospital of Philadelphia
Many children with Down syndrome have a natural sociability that makes everyone around them smile. This social affinity is a strength to be valued and nurtured. We often hear “he’s the mayor of the school” or “she greets everyone as they walk in the door.” .... Given this sociability, I was surprised to see frequent difficulties in gaining and maintaining social relationships as children got older...
Research news and commentary #4 for 2014
Can Down syndrome be treated?
Emily Underwood, Science, Vol 343, 28th February 2014
Although the prospect of treating Down syndrome at an early age, or even in the womb is still far off, one geneticist now calls it an 'an achievable goal' ...
An 'excellent four-page piece on the state-of-the-art in Down syndrome research.' Dr Brian Skotko, Massachussets General Hospital Down Syndrome Program.
Family and Community Services (FACS) Analysis and Research Seminar Series - presentation
Assoc Prof Julian Trollor Chair Intellectual Disabiity and Mental Health, Dept Developmental Disabiity Neuropsychiatry (3DN) UNSW, Family and Community Services (FACS) Analysis and Research Seminar Series, Sydney, 27th february 2014
A review of research undertaken by Prof Trollor and his colleagues at UNSW, available to be viewed online.
Susan Young, MIT Technology Review, 26th February 2014
... In a study published in the New England Journal of Medicine on Wednesday, DNA-based tests outperformed standard screening methods, which include ultrasound imaging and biochemical test of a mother’s blood ...
... In a study published in the New England Journal of Medicine on Wednesday, DNA-based tests outperformed standard screening methods, which include ultrasound imaging and biochemical test of a mother’s blood ...
- New England Journal of Medicine article: DNA Sequencing versus Standard Prenatal Aneuploidy Screening
- Boston Globe news article
Research Down Syndrome - News, 21st February, 2014
Disrupted sleep is commonly observed throughout the lifespan of individuals with Down syndrome, with an observed incidence of 50-100%. Obstructive sleep apnea syndrome(OSAS) has been demonstrated in studies to be a key contributor to the loss of sleep quality in Down syndrome. OSAS increases with age.
The relation of OSAS to cognitive and behavioral impairment remains poorly understood. This study, supported in part by a Research Down Syndrome grant, describes cognitive outcomes in children with or without OSAS, ages 7-12. The study assessed cognitive outcomes with the Arizona Cognitive Test Battery, a set of psychometric measures that was designed and validated for this group ...
The full text of the paper is available online here.
Citation
Jennifer Breslin et al, Obstructive sleep apnea syndrome and cognition in Down syndrome
Developmental Medicine and Child Neurology, January 2014 (Early view. Online Version of Record published before inclusion in an issue)
New Drugs May Transform Down Syndrome
Recent breakthroughs may lead to pharmacological treatments for the chromosomal disorder
Jenni Laidman, Scientific American, Volume 25, Issue 2, 1st Mach 2014
People born with Down syndrome have always been considered to be incurably developmentally delayed—until now. In the past few years a number of laboratories have uncovered critical drug targets within disabled chemical pathways in the brain that might be restored with medication. At least two clinical trials are currently studying the effects of such treatments on people with Down syndrome. Now geneticist Roger Reeves of Johns Hopkins University may have stumbled on another drug target—this one with the potential to correct the learning and memory deficits so central to the condition ...
After More Than 50 Years, a Dispute Over Down Syndrome Discovery
Jenni Laidman, Scientific American, Volume 25, Issue 2, 1st Mach 2014
People born with Down syndrome have always been considered to be incurably developmentally delayed—until now. In the past few years a number of laboratories have uncovered critical drug targets within disabled chemical pathways in the brain that might be restored with medication. At least two clinical trials are currently studying the effects of such treatments on people with Down syndrome. Now geneticist Roger Reeves of Johns Hopkins University may have stumbled on another drug target—this one with the potential to correct the learning and memory deficits so central to the condition ...
After More Than 50 Years, a Dispute Over Down Syndrome Discovery
Elizabeth Pain, Science Now, 11th February 2014
It would have been a personal triumph for Marthe Gautier, an 88-year-old pediatric cardiologist and scientist living in Paris. On 31 January, during a meeting in Bordeaux, Gautier was to receive a medal for her role in the discovery of the cause of Down syndrome in the late 1950s. In a speech, she planned to tell an audience of younger French geneticists her story about the discovery—and how she felt the credit she deserved went to a male colleague, Jérôme Lejeune.
But Gautier's talk was canceled just hours in advance, and she received the medal a day later in a small, private ceremony. The French Federation of Human Genetics (FFGH), which organized the meeting, decided to scrap the event after two bailiffs showed up with a court order granting them permission to tape Gautier’s speech. They were sent by the Jérôme Lejeune Foundation, which wanted to have a record of the talk. The foundation, which supports research and care for patients with genetic intellectual disabilities and campaigns against abortion, said it had reason to believe Gautier would "tarnish" the memory of Lejeune, who died in 1994 ...
Patients with learning disabilities become ‘invisible’ in hospitals, says study
'Clogged pipleline' may explain Down syndrome leukemia
It would have been a personal triumph for Marthe Gautier, an 88-year-old pediatric cardiologist and scientist living in Paris. On 31 January, during a meeting in Bordeaux, Gautier was to receive a medal for her role in the discovery of the cause of Down syndrome in the late 1950s. In a speech, she planned to tell an audience of younger French geneticists her story about the discovery—and how she felt the credit she deserved went to a male colleague, Jérôme Lejeune.
But Gautier's talk was canceled just hours in advance, and she received the medal a day later in a small, private ceremony. The French Federation of Human Genetics (FFGH), which organized the meeting, decided to scrap the event after two bailiffs showed up with a court order granting them permission to tape Gautier’s speech. They were sent by the Jérôme Lejeune Foundation, which wanted to have a record of the talk. The foundation, which supports research and care for patients with genetic intellectual disabilities and campaigns against abortion, said it had reason to believe Gautier would "tarnish" the memory of Lejeune, who died in 1994 ...
Patients with learning disabilities become ‘invisible’ in hospitals, says study
St Georges Hospital, University of London - News, 7th January 2014
Patients with learning disabilities become ‘invisible’ in hospitals, says study ...'Clogged pipleline' may explain Down syndrome leukemia
Josh Barney-Virginia, Futurity, 3rd March 2014
New insight into a mysterious form of leukemia that can appear and then disappear in children with Down syndrome could have implications for other forms of leukemia and even other diseases. Researchers have linked a mutation causing Down syndrome-associated leukemias to abnormalities in cells that produce platelets, called megakaryocytes ...
New insight into a mysterious form of leukemia that can appear and then disappear in children with Down syndrome could have implications for other forms of leukemia and even other diseases. Researchers have linked a mutation causing Down syndrome-associated leukemias to abnormalities in cells that produce platelets, called megakaryocytes ...
Radio Australia, 24th December 2013
A team of researchers from Australia and Papua New Guinea has started an innovative study of children with disability in the Pacific ...
Transcript and audiofile (5m 50s)
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