Wednesday, 30 September 2009
Tuesday, 29 September 2009
By ANDREW POLLACK , published: September 28, 2009
A biotechnology company developing what was expected to be a groundbreaking blood test for Down syndrome fired its chief executive, a top research official and three other employees Monday after an investigation into “mishandling” of test data and results.
The company, Sequenom, announced the mishandling of the data in April, saying that the superlative results it had announced for its prototype test could no longer be trusted. A committee of independent board members then hired a law firm to conduct an investigation.
Sequenom said Tuesday that its investigation concluded that the company had “failed to put in place adequate protocols and controls” for studies and that some employees had failed to exercise adequate supervision. As a result, the company said in a regulatory filing Monday, “inadequately substantiated claims, inconsistencies and errors” about the Down syndrome test had been disclosed to investors.
The board fired Harry Stylli, the chief executive, and Elizabeth Dragon, the senior vice president of research and development, effective immediately, as well as three other employees whose names were not disclosed. Paul Hawran, the chief financial officer, and Steven Owings, the vice president for commercial development of prenatal diagnostic tests, resigned.
The company said the individuals who were dismissed or resigned had denied any wrongdoing. But it said the “committee’s investigation has raised serious concerns, resulting in a loss of confidence by the independent members of our board of directors in the personnel involved.”
Sequenom’s announcement left many questions unanswered, in particular how exactly the data was “mishandled” and whether what happened was mere sloppiness or outright falsification and fraud.
The lack of detail prompted one investor on Sequenom’s conference call Monday to accuse the company of “dancing around” what had happened, saying that would undermine investor confidence in the company.
Harry F. Hixson Jr., the chairman of the company, replied that the company could not say more because it was under investigation by the Securities and Exchange Commission and had been sued by shareholders. Sequenom said it would present the results of its investigation to the staff of the S.E.C.
Still, Mr. Hixson said that it did not appear that the officers who were fired or quit had profited financially “from any of the transactions here.”
Sequenom, based in San Diego, was developing a test to detect the chromosomal abnormality Down syndrome in fetuses, using a sample of the pregnant mother’s blood. Such a noninvasive test might have eventually replaced the tests now used, amniocentesis and chorionic villus sampling, which are more invasive and can cause miscarriages.
The company’s work drew widespread attention from Wall Street, the medical community and the news media, especially after it was reported that in early trial runs the test was virtually perfect in detecting Down syndrome, with no false positives or false negatives. Down syndrome, in which a person has an extra copy of a particular chromosome, is marked by some mental retardation and unusual facial characteristics.
The data, though announced by the company, had not been published in peer-reviewed medical journals.
The full report is published online here
Monday, 28 September 2009
Counselling Support Groups - Carers NSW and Counselling for All
October - November
Building Supportive Communities for people with disability - Family Advocacy, West Ryde
Transition for Carers Forum - Carer Support Team, Children's Hospital, Westmead
Moving Out - from planning to action - Family Advocacy, Hornsby, Newcastle, Burwood, Wollongong
Wills and Estate Planning - DS NSW, Bankstown
Planning - Step Ahead Consulting, Chatswood
21 and 28 November
Saturday, 26 September 2009
9.30 am - 12.30 pm
Friday 23 October 2009
Presenter: Bob Lee, Sunshine Coast Citizen Advocacy
Designed for families, allies and people who work with people with disability
Register by 15 October
Moving out…. from planning to action
A workshop about how you can support your family member with developmental disability move into a home of their own with support .
This workshop will provide examples of how other families have gone about supporting a family member to move into a home that suits their needs.
9.30 - 2.30 pm
Hornsby: Monday 2 November
Newcastle: Wednesday 4 November
Burwood: Thursday 5 November
Wollongong: Friday 6 November
For further details and registrations for both workshops, contact
PO Box 502 Epping NSW 1710
Phone: 02 9869 0866 or 1800 620 588 (NSW non metro callers)
Fliers for both workshops are available online at www.family-advocacy.com
Friday, 25 September 2009
Home and Away has gone from fiction to ridiculous. How can the scriptwriters ever think viewers would believe such a nonsense story line as a ''community house'' for people with disabilities with not only a spare bed but also where potential residents just need a desire to live there to start their ''trial transition''? Obviously it's written for the overseas market. Parents of people with disabilities in NSW know it doesn't happen anything like this.
The really sad thing is that it perpetuates the myth that there are supported accommodation places waiting to be had. How wrong can they be?
Thursday, 24 September 2009
Comedy is King was a wonderful night - there are many, many people to thank and congratulate. They will all be thanked individually and personally, this is a just a quick public recognition of a great night.
Sponsors, donors and supporters
Wednesday, 23 September 2009
2.00 pm, Saturday 21st November, 2009
at our new office and resource centre, at
80 Weston Street, Harris Park
At the meeting the Annual Financial Statements will be presented and elections will be held for membership of the Board
Light refreshments will be provided
Phone the DS NSW office on 02 9841 4444 or click on the links below to download/request
The closing date for nominations is 23rd October 2009
There is no charge but booking is required for catering:
Phone 02 9841 4444 or email email@example.com
Tuesday, 22 September 2009
From Siblings Australia:
We are hoping to hear from adult siblings through an online survey. Please spread the information amongst your networks. The purpose of this survey is to research:
- The nature of the relationship between siblings and their brother or sister living with disability
- The type/amount of unpaid caregiving and support provided by adult siblings
- The perceived needs, both emotional and practical, of adult siblings
- The type of support siblings would like for themselves and in their role as a support person
- The concerns siblings may have about the future
The more participants we have, the better. Please complete survey by end of September. The results of this research will be presented at the Siblings Australia “Creating Connections” Conference. We hope that the survey will provide information to professionals, agencies and government departments to better support the needs of adult siblings.
Link to survey is:
Monday, 21 September 2009
Sunday, 20 September 2009
Carer abuse of disabled on the rise Sun-Herald, 20th September 2009
Hospital 'should have told' of Down's risk The Age, 19th September 2009
Will Down Syndrome disappear? Washington Post, 16th September, 2009
Relative Values: Max Lewis and his mother, Sandy Times Online, 13th September, 2009
Patricia E Bauer's Disability News blog is back after a short summer break.
Saturday, 19 September 2009
This report, highlighting inadequate provision of supported accommodation in NSW, in the Sydney Morning Herald on Tuesday 15th September:
prompted this response:
Looking the other way
Letter to the Editor, Sydney Morning Herald, Thursday 17th September 2009)
Jim Moore, the head of the NSW Department of Ageing, Disability and Home Care, says there are 1076 people seeking supported accommodation in NSW (''Disabled and elderly housed in caravan parks'', September 15). Mr Moore's department does not know how many disabled people are seeking supported accommodation, because it doesn't want to know. The true number would embarrass the Government.
His department and the Department of Housing make it clear to people with disabilities and their carers there is effectively no supported accommodation to be had unless they are leaving jail or some other government care. Accordingly, people do not waste time chasing a non-existent service.
I could collect a list of 100 people within a week who seek supported accommodation and are not counted among the 1076.
Dianne Thian, Kensington
We don't doubt that as an individual Dianne Thian could find another 100 people in a week - we could do it in a day or two, as could most other similar organisations in NSW.
The NSW Teachers Federation has welcomed the slowdown of the implementation of changes.
There does appear to be any comment about this latest development on the Department of Education and Training Website. This blog post gives links to the DET briefing papers on the proposals.
Note that despite some rumours to the contrary that we have heard, the DET briefing papers explicitly deny that there is any proposal to close support classes for children with disabilities, or to reduce learning support officer positions.
Friday, 18 September 2009
Buddy Walk - Australia 2009 event kits, for the Sydney and Newcastle events are now available to download from here.
Your event kit includes:
- BUDDY WALK 2009: What’s it all about?
- SCHEDULE: What to look forward to on the Day
- WALK ROUTE: Your Buddy Walk Map and route instructions
- TRANSPORT: How to get there and get home – public transport options
- PARKING: Where to park.
- GUIDELINES and GENERAL INFO: First Aid, toilets, refreshments available, weather and help
- WHAT TO BRING: Be prepared!
- FUNDRAISING – the fun and easy way!
Thursday, 17 September 2009
A new DVD – Starting School: Stories from parents of children with a disability – identifies strategies to ease the transition to school.
The DVD features the stories of six families who tell of their experiences as they prepared for their child to go to school for the first time.
Two of the families have children with Down syndrome. Doesn't Sam look good on the DVD label?
Our Parent Support and Information staff have reviewed the DVD and predict that it will be useful for families from the earliest stages of thinking seriously about choosing a first school. It is realistic, encouraging flexibility and cooperation, acknowledging the expertise of parents.
It will be useful for all parents, including those who are not always able to attend meetings about school matters, and includes both mothers and fathers, grandparents and siblings. A number of principals, teachers and learning support officers are interviewed. At 25 minutes, it delivers substantive information and views.
The DVD was produced by the Lady Gowrie Childcare Centre with funding of $148,000 from the NSW Government.
The DVD, in English, Cantonese, Dari, Dinka, English, Korean, Mandarin and Vietnamese, is available on request to the Early Childhood Intervention Infoline 1300 65 68 65.
A number of copies are available in our library.
A few tickets remain - so if your are quick, you will be able to join us. Click here for details of the entertainment lineup, and for booking options.
Monday, 14 September 2009
The 2009 calendar was a sellout – we have ordered a larger print-run, but order early to avoid missing out.
Thank you to all who have contributed photos - we could not do it without you!
Craig didn’t know that in 2000 he was signing up for a ten year + project, but he loves doing the calendar, and we love what he does. Thanks Craig for your commitment and creativity - we look forward to many more calendars.
Saturday, 12 September 2009
"Concert marks Down syndrome milestone"
By NATALIE KOCH
Special to The Japan Times, Friday, Sept. 11, 2009
Akihito Ochi is a gifted pianist. He also has Down syndrome.
He started playing piano when he was 9 years old and held his first concert at the age of 10. His mother practiced classical music pieces with him, and he eventually learned how to score music. Ochi has composed and improvised music and performed publicly since he was about age 14.
Ochi recorded his first album "Like The Sea," in 1997, without any formal training, which was followed by "My Friend" in 2000, "A Bouquet Of People's Gratitude" in 2004 and his most recent release, "Fly To The Sky," in 2006. In 2004 and 2006, he also performed at World Down Syndrome Congresses in Singapore and Canada, and at EXPO 2005 in Aichi.
The concert is being held in part to mark the 50th anniversary of Dr. Jerome Lejeune identifying the cause of Down syndrome, where children have an extra copy of chromosome 21, known as a Trisomy.
Ochi's family hopes the performance will both raise awareness of Down syndrome and serve to thank those who have supported Akihito throughout the years.
Thus, a concert by the young pianist is just what the doctor ordered.
Saturday 21 and 28 November 2009
Time: 10.00am - 2.30pm (with a 45 min lunch break)
Where: Dougherty Centre, Chatswood
Age: 15 years +
Cost: $115 (for both days incl.GST)
Enrolment date: Friday 30 October
Topics covered by participants in the Planning workshop include:
- Planning my week
- Things I would like to do
- Keeping a calendar/diary
- Living with other people
- Planning what I need for my week
- Planning an outing
- Making a plan that works for everyone
- Finding out information
- Budgeting my money
- Need vs wants
- Saving money for something special
- How I can save money
- Managing time in my day
- Future plans
To enrol or for more information:
Step Ahead Consulting Pty Ltd
2/101 Milson Rd Cremorne Point NSW 2090
Ph: (02) 9909 0767 ; Fax: (02) 8569 0252
Friday, 11 September 2009
Shop 24 Edgecliff Centre
203 New South Head Rd
Edgecliff, Sydney, NSW 2027
Ph 02 9362 3889
Fax 02 9362 3479
7pm – 9pm
Tuesday, 24th November 2009
Bankstown Sports Club
Speaker: Jonathan Harris
Senior Partner, Harris Freidman Hyde Page
There is no charge for this event, but prior booking is essential.
All enquiries and registration: contact Siena O’Brien at firstname.lastname@example.org or phone 9841 4411
Former Australian Test Cricketer Adam Gilchrist has signed on to support the FREEDOM WHEELS Modified Bike Service for kids with disabilities, for another two years.
It was Amway, who sponsor the program through their One by One Campaign, who made him aware of FREEDOM WHEELS, when they put out a challenge to Adam for the 2009 Indian Premier League. His task was to hit 25 sixes and Amway would contribute funding for these modified bikes. Not one to reject a challenge, Adam went beyond his target and hit 29 sixes, up from 19 sixes during the previous season.
After seeing the modified bikes in action and the smiles on the children’s faces, Adam was more than happy to continue supporting the service.
“As a father of 3 kids, I know how important it is and the joy a bike means to a child. On behalf of Amway, it is an honour to be a part of this program,” Adam said.
The FREEDOM WHEELS® Modified Bike Service customises standard pushbikes to give a new kind of independence to children with disabilities by allowing them to ride a bicycle for the first time. Since the program began, almost 400 bikes have been delivered throughout the country.
FREEDOM WHEELS is a joint undertaking between the charity, TADNSW (Technical Aid to the Disabled) and principal corporate sponsor Amway of Australia, whose support has allowed TADNSW to take the program regionally and now interstate.
“We have been modifying bikes for many years now and the initiative brings so much joy to hundreds of kids with disabilities by allowing them to ride a bike for the first time. We want to show the difference these bikes make to these kids and to their families. Suddenly, the whole family can go for a bike ride, which is often a huge achievement,” TADNSW CEO Joy Barrett said.
Prior to the sponsorship support provided by Amway’s One by One Foundation, volunteers would spend between 30 and 50 hours modifying just one bicycle. This has now been reduced to as little as three hours with the introduction of pre-made components.
Thursday, 10 September 2009
As a part of Carers Week activities, The Carer Support Program at the Children’s Hospital at Westmead invites parents and carers to attend the Transition for Carers forum.
REGISTRATION IS FREE. Morning tea and lunch provided.To register complete this registration form or call 9845 3590. Registrations close on 9/10/2009. Places are limited.
Wednesday, 9 September 2009
Akihito Ochi Live on Stage in Canada - part 1
Akihito Ochi Live on Stage in Canada - part 2
Akihito Ochi Live on Stage in Canada - part 3
Akihito Ochi Live on Stage in Canada - part 4
Thanks to Eiichi Momotani (Board member of Down Syndrome International) for passing on the links.
Monday, 7 September 2009
The Illawarra Mercury followed up with Tim Keeble's story on 12th:
On August 1, Andrew had his first taste of rugby when he took up Kiama club president Mark Bryant's invitation to take part in a friendly against University. Andrew had the time of his life, scoring three tries and narrowly missing his conversion attempts. After the game, he shared a couple of beers and a photograph with the players and was presented with a Kiama jersey and club tie.
"He had a ball. You couldn't wipe the smile from his face," Bryant said. "The idea came about while I was having a social drink with his parents, Larry and Anne, and we thought it would be wonderful."
The game was 10 minutes each way and involved mostly third-grade players. "It was great to see him enjoying being part of a team and experiencing the rugby culture," Bryant said.
"He made a speech after the game and had everyone in stitches when he said he might have to get a personal trainer to get a bit fitter. "I can't speak highly enough of University for supporting us and the referee was also a big help."
"Andrew Case. The 22-year-old with Down syndrome turned out with the mighty Kiama thirds last Saturday, scored three tries, and his mum is still crying. Good on you, Mrs Case, and Andrew. "
Peter FitzSimons, Sydney Morning Herald, 15th August 2009
Sunday, 6 September 2009
Saturday, 5 September 2009
Comedy is King - latest news: Greg Anderson (Australia's Electric Cowboy) joins entertainment line-up
featuring Brian Doyle and friends – some of Australia’s best comedy talent (Vince Sorrenti, Sean Kramer and more)
Plus the legendary Leo Sayer and Glenn Shorrock
* Just confirmed *
Greg Anderson, Australia's Electric Cowboy is returning from the United States for a rare Australian performance, live in the Ballroom at Comedy is King.
Football legends Craig Wing, John Raper, Ben Elias, Jarryd Hayne and more.
With a wicked sense of humour immense Irish charm, legendary Dublin-born comedian Brian Doyle delights his audiences.
Click here to download an invitation and reservation slip
or you can book now on 1800 804 275
or contact Priscilla at Down Syndrome NSW email@example.com ; phone 9841 4444
Click here to download a brochure about this important evening - you are welcome to email it to friends and supporters
Castle Hill RSL Gymnastics Club in conjunction with Gymnastics NSW has been working towards the education and training essential to developing an ongoing Special Needs Program during the Term as well as the already established Holiday Clinics.
With our responsibility as a 5 star club within the Association and commitment to support Coaching Courses and State based Competitions, time limitations have proven to challenge our desired plans to this end until now…...
Castle Hill RSL Gymnastics is seeking your Interest in consideration of programming a weekly Special Needs class during the School Term for Children within our community in 2010.
We would like to run a 6 week block program each school term from week 3 to week 8 on a Sunday. Sunday was chosen as it is the most valuable quiet time in the facility. This class would be specifically designed for Special Needs Children, not including siblings. Parent/ carer involvement is desired, although we are hoping to establish a network of Volunteer helpers to support each class program to give respite to families who have need, otherwise.
There would be 2 classes of 90 minutes duration, the cost for the program inclusive of Gymnastics NSW Affiliations and RSL Junior Sports Membership would be $70.00 per term
Gross Motor Body Disability
Class Time 10:30am to 12noon
- Down Syndrome
- Cerebral Palsy
- Physical Disability
- Poor Muscle tone
- Hearing/Sight impairment
Class Time 12:30pm to 2pm
- Asperger’s Disorder spectrum
- Autism Spectrum
- Neurological disorder spectrum
(Click here for) an Expression of Interest Questionnaire that should only take a few minutes to complete. If you are involved in a Network Group in Special Needs, it would be helpful if you could pass this questionnaire onto others who may be interested.Please return to the address given so that we can move forward to make this program a reality. If you would rather complete the questionnaire by Email attachment, please email me on firstname.lastname@example.org so that I can send the questionnaire directly.
We would like to gather this information by the start of October.
Friday, 4 September 2009
The Endeavour Foundation, a large disability service provider and NDS member based in Queensland, has acquired the supported employment services of Cumberland Industries, which has been under administration since May.
Endeavour will maintain the jobs of the 580 supported employees whose future had been in the balance since the appointment of an Administrator at Cumberland. Cumberland’s supported employees, their families and carers will welcome this commitment. Endeavour has also indicated that it is hopeful that many of the support staff will also be able to maintain their employment in the businesses.
Endeavour will continue to operate the Filpac, Clean-Pac, Pak-It-Rite and Sew-It-Rite disability enterprises on a business as usual basis. These businesses will be the first disability services that Endeavour has operated outside of Queensland. Endeavour was not the only organisation located outside NSW to express interest in Cumberland, suggesting the declining importance of State boundaries in the sector.
The acquisition of the businesses by Endeavour was recommended by the Cumberland Administrator, Mr Peter Hedge and formally accepted by a meeting of Cumberland’s creditors on 1 September 2009. The acquisition has also been formally approved by FaHCSIA and a transfer of funding has taken place.
Endeavour staff will be meeting with the supported employees, their families and carers to discuss plans and assess needs as the businesses prepare to move forward following months of uncertainty. A dedicated information line - 1800 554 340 - has been established for employees, their families and carers and operates from 9:00am to 5:00pm AEST Monday to Wednesday. Assistance can be arranged outside these times if necessary.
Thursday, 3 September 2009
Selection criteria and the EOI Form are available from the Down Syndrome Down Under Swimming Organisation website.
Expressions of interest are due in by 11 September 2009.
Team Australia ready to leave for the 4th international Down Syndrome Swimming Championships in Portugal in 2008
"Diagnostic overshadowing" refers to the difficulties that can be encountered in identifying features that are caused by the presence of Down syndrome, and those that are caused by an additional condition.While it can be daunting to confront yet another label or diagnosis, the process of identifying the contributing factors does not change the person - its purpose should be to throw light on useful interventions and supports, and perhaps to qualify the person to receive the support services they need.
"Dual diagnosis" can refer to any two conditions co-existing.
These two new web pages on the Down Syndrome NSW website provide information to support families dealing with complex needs that might be manifest when a person with Down syndrome is also living with either a mental health concern or an Autism Spectrum Disorder.
Down syndrome and mental health
This page provides links to resources on mental health and Down syndrome, and to appropriately experienced and qualified mental services available in NSW.
Dual Diagnosis: Down syndrome and Autism
While it is clear from clinical experience and research that a small proportion (around 7 %) of people with Down syndrome also meet the international criteria for Autism Spectrum Disorder, the diagnosis is complex and requires an experienced and expert clinician. It is recommended that a consultation be sought with an appropriate specialist such as a developmental paediatrician, a specialist physician in developmental disability medicine or a psychiatrist.
The links on this new page on our website provide information, but are not a substitute for appropriate professional consultation.
Your suggestions for additional links for either page are welcome - contact email@example.com
Wednesday, 2 September 2009
Available to the library this week are abstracts of all the papers presented in Dublin and also copies of reports from some of the poster presentations.
Adults with Down syndrome are at reduced risk of cutaneous melanoma: results from a French study by Dr. Daniel Satge, France
Diagnosis communication by Dr Carlo Baccichetti, Italy.
Diagnostic Overshadowing: The role of the multidisciplinary team by Donna Heerensperger, Canada.
Oral Health Promotion - Working together - The way forward by Dr. Maura Cuffe, Ireland.
A survey of experiences of people with Down syndrome in New Zealand by Dr Susan Foster-Cohen, New Zealand.
Comparative Study of the Social activities, participation and friendships of Irish adolescents with Down syndrome attending mainstream and special schools by Loraine Matthews, Dr. Shay Caffrey, Ireland.
Investigating the early reading abilities of children with Down syndrome by Anne van Bysterveldt, New Zealand.
Developmental Trajectories for Young Children with Down syndrome by Stephanie Bennett, UK
Wellbeing for children and young people with Down syndrome in New Zealand: A conceptual framework by Maree Louise Kirk, New Zealand.
Phonological awareness of children with Down syndrome: Its role in learning to read and the effectiveness of related interventions by Dr Chris Lemons, USA.
A New Zealand resource to support successful inclusive transition of children with Down syndrome into daycare and school by Mrs Zandra Vaccarino, NZ
Lifestyle of people with Down syndrome in the south region of Brazil by Prof. Alexandre Marques, Brazil.
Study to evaluate the efficacy of The Listening Program in improving auditory skills and speech for children with Down syndrome by Gwyneth Jeyes, UK.
Building a young child's language skills with pain and suffering by Ms Mary Frances Edwards and Ms Diane Lowry.
Structuring a social communication group for young adults with Down syndrome by Diane Lowry & Caitriona Ryan
Toys that stimulate language by Diane Lowry & Mary Frances Edwards, Ireland.
Trying to get over prejudice on Down syndrome by Tomko Hazegawa, Japan.
Many of these are single pages or pamphlets, a few are longer. None are from the keynote speakers, but the abstracts of their presentations are included in the abstract book.
Let us know if you'd like to look at any of these.
Also the library's direct line phone number is: (02) 9841 4410