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NOFASD Australia

Issue #2, October 2013
Dear Members & Supporters,
Below are our key areas covered to keep you in The Loop,
This month in "The Loop"
It has been a busy time since our last newsletter and the launch of our new brand, website and strategic plan.

In September NOFASD Australia attended two conferences in Canada, the first Consensus Development Conference on Legal Issues in FASD and the First International Conference on the Prevention of FASD. Both conferences were well worth attending with a breadth of topics covered and delegates sharing information, resources and experiences from around the world.  

This edition of ‘The Loop’ contains a variety of news items that may be of interest to you. I think the highlight for the FASD community in Australia over the last month was the airing of the SBS Insight program, ‘Drinking when Pregnant’. It was fantastic to see the issue of FASD covered in such detail with a particular focus on the experiences of families and individuals living with FASD. Many of the people involved in the program are part of the NOFASD Australia Community and we would like to personally thank them for their courage and determination in speaking out about FASD.

In other news, NOFASD Australia has launched a new Facebook page. Please check it out and be sure to click on the ‘like’ button in the top right of the page so that we can start spreading the word about the work that we do.

If you haven’t already had a look at our new website please do and please encourage your friends, family members and networks to join the NOFASD Australia Community so that they can receive our newsletter.

Until next time,

Leila Picken

National Policy Officer

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Of Special Interest
First International Conference on the Prevention of FASD, September 2013

This was the first international conference specifically dedicated to the issue of preventing FASD. The conference attracted over 700 delegates from over 35 countries. The conference presented a fantastic opportunity to meet people working in the area of FASD from all around the world.

A wide range of topics were covered during four plenary sessions and over 40 short presentations delivered in concurrent breakout sessions.

The plenary session topics were:
•    Challenges in FASD Prevention
•    FASD Prevention in different countries
•    FASD Prevention among different populations
•    Controversial issues of FASD prevention

The FASD Prevention in different countries plenary was particularly impressive with representatives from South Africa, France, Russia, Uganda, Australia, Brazil, Finland, Japan, United Kingdom, Europe, United States of America, and Canada.

Many alarming statistics were presented about FASD prevalence or suspected prevalence around the world and levels of alcohol consumption among women of child bearing age. However, there were also many inspiring stories of effective FASD prevention initiatives around the world. These included the Sheway program in inner city Vancouver, the NOFAS Circle of Hope in the US and the Italian “Mamma Beve, Bimbo Beve” (Mummy Drinks, Baby Drinks) campaign. The success of the Italian campaign has spearheaded work to develop a social marketing campaign across Europe in 2014 to be led by EUFASD and Eurocare.

NOFASD Australia made two presentations at the conference. National Policy Officer, Leila Picken, presented ‘A Story of FASD Prevention in Australia: From Kitchen Table to National Peak Body’ and CEO, Vicki Russell, presented ‘Fetal Alcohol Exposure: A Road Paved with Good Intentions’, some preliminary findings from Vicki’s PhD research.

On the final day of the conference, delegates supported the establishment of an International Society for FASD and an International Journal of FASD to be connected to the Society. Delegates also agreed the final draft of the International Charter on Prevention of FASD.

We will endeavour to keep you posted on developments to establish the International Society for FASD and we will also let you know when presentations from the conference become available online.
 

Consensus Development Conference on Legal Issues in FASD, September 2013

This was the first juried consensus development conference on the legal issues relating to FASD. The two-day juried hearing of evidence and scientific findings addressed six specific questions on legal issues related to FASD. The jury panel was comprised of a range of professionals including, judges, lawyers, academics, children’s advocates, paediatricians, psychologist and a member of parliament.  

The jury developed a consensus statement which was delivered on the final day of the conference to enable feedback.

The jury’s recommendations covered a wide range of issues, including the obligations of sentencing courts, the defence of diminished responsibility, family and community supports, the need for training, mandatory sentences vs conditional sentences, and the need for improved screening and diagnostic services.

The recommendation that gained the strongest support from all delegates was that ‘every child going into the care of the state should receive a full medical examination and a full psychological examination that would include a screen for FASD. Similarly, admission procedures in correctional centres (either on remand or on sentence) should include a mental health/ FASD screen’.

Watch this space for the final version of the Consensus Statement on Legal Issues in FASD. 

 

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National News and Media
SBS Insight Program – Alcohol and Pregnancy

On 15th October SBS Insight dedicated a program to raising awareness in the Australian community about FASD. The program, titled ‘Drinking when Pregnant’ asked the question: ‘Is alcohol ever ok for expectant mothers?’

During the programme three young people open up to a studio audience about what it is like to have Fetal Alcohol Spectrum Disorders (FASD). Experts in the audience, including Professor Elizabeth Elliott, expressed concerns that many doctors don’t have a good understanding of FASD and that women are getting mixed messages from doctors about drinking during pregnancy.

NOFASD Australia would like to thank all the parents, carers and young people involved in the program for their courage in speaking out on their experiences of living with FASD. We would also like to thank SBS for drawing attention to such an important issue.

Read an overview of the program or watch the program.

The SBS Insight website has also provided a brief overview of FASD and a range of opinions about alcohol and pregnancy via their twitter feed.

 

‘My Daughter has FASD’

This news article followed the SBS Insight program and focuses on Tammy Penna’s story. Read more

 

Sarah’s story on living with FASD – An Update

Last year we featured a short story about Sarah and her journey living with Fetal Alcohol Syndrome. Sarah lives with her maternal aunt Deb and it was through Deb’s love of horses that Sarah started riding at the age of 4 years of age. Last year we shared with readers that Sarah had been accepted into Para-Equestrian with her horse Nippa. Sarah is now 21 and is the RDA QLD State Dressage Champion and also the QLD Para-Equestrian State Dressage Champion. Sarah is travelling to Melbourne in November to compete in the RDA Nationals and is hoping to have been selected to the Special Olympics Equestrian Team.

Congratulations Sarah and good luck in November! We look forward to a further update.

Have a look at the NOFASD Australia website and share your story about living with FASD.

 

Pregnant Pause campaign

In September, the Foundation for Alcohol Research and Education (FARE) launched the Pregnant Pause Campaign. The campaign is challenging 500 Australians to ‘take a Pause’ from alcohol consumption during the pregnancy of a loved one – wife, partner, daughter, sister, friend or work colleague, with a particular focus on Aussie dads-to-be.

The campaign is raising funds for prevention, education, diagnosis and support for the thousands of people across Australia who are impacted by FASD. To register or donate

 

Second Alcohol Label Audit

FARE has released an Alcohol Label Audit conducted by Ipsos Social Research Institute. The Audit examined for a second time the uptake of the alcohol industry’s DrinkWise ‘consumer information labels’. When looking at the alcohol pregnancy warning label specifically, the Audit found that 26 per cent of products carried a DrinkWise alcohol pregnancy warning label. More broadly, the Audit found that labels are still only applied to 37 per cent of alcohol products and that a vast majority (86 per cent) of these labels took up less than 5 per cent of the alcohol label or face of packaging. 92 per cent of the labels were placed on the back, side or bottom of the product. Read the report

 

Should Fetal Alcohol Disorder be Classed a Disability?

In this edition of 7.30 report, the ABC focuses on a family living with FASD in Fitzroy Crossing. During the report doctors and families argue that the biggest way to combat FASD would be to recognise it as a disability.

View the 7.30 Report telecast

 

Puppets headline a short film about FASD – ‘Barkly Fights FASD’

A new short film from Tennant Creek raises awareness about Fetal Alcohol Spectrum Disorders through the use of puppets.

The film, ‘Barkly Fights FASD’, was created and performed by the people of Barkly along with filmmaker Biddy O’Loughlin and supported by the Anyinginyi Health Aboriginal Corporation.

View the short film

 

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International News and Media
FASD Online Survey for Caregivers on Nutrition

Oklahoma State University is conducting a survey titled ‘Feeding my child with Fetal Alcohol Spectrum Disorders’. Parents and caregivers of children with FASD aged between 3 and 5 are invited to take part in the survey. The purpose of the research is to learn whether children with FASD have any difficulties with eating. A wide range of questions will be asked covering topics such as food responsiveness, enjoyment of food, desire to drink, slowness in eating, food fussiness, satiety responsiveness, emotional overeating, and emotional under eating. The goal of the research is to develop nutrition education for caregivers and nutrition aids for children with FASD. Access the survey

 

New book: When Rain Hurts

When Rain Hurts is the story of one mother’s quest to find a magical path of healing and forgiveness for her son, a boy so damaged by the double whammy of prenatal alcohol abuse and the stark rigors of Russian orphanage life that he was feral by the time of his adoption at age three. When Rain Hurts puts an unapologetic face to living and coping with this tragedy while doggedly searching for a more hopeful outcome for one beautiful, innocent, but damaged little boy. Access the book

 

New book: Fetal Alcohol Spectrum Disorders – Interdisciplinary Perspectives

Articulating fundamental knowledge, cutting edge initiatives and emerging trends in FASDs, this book provides an evidence base that will enable services to identify and respond to the need for action on FASDs. It recognises that families – natural, foster or adoptive – are at the heart of this process, and that their rich knowledge base, grounded in their lived experience, is crucial. The book is edited by Barry Carpenter, Carolyn Blackburn, Jo Egerton. Access the book

 

Managing Math Meltdowns

This presentation by Dr. Claire Coles from the “Living With FASD 2013 Summit” provides ideas on how parents and educators can more effectively teach math to children with FASD, based on each child’s unique learning patterns and requirements. Learn more

 

Ask the Expert – New Column from FASD Center for Excellence

This first column of ‘Ask the Expert’ features interviews with Dr. Kenneth Lyons Jones and Dr. Ann Streissguth. Read more 

 

FASD-CAN Inc – New FASD Care Action Network in New Zealand

On International FASD Awareness Day Alcohol Healthwatch New Zealand announced a new Care Action Network organisation called FASD-CAN Inc. FASD-CAN is a non-profit organisation with the primary objective to unite caregivers, strengthen families, support individuals and educate about FASD across the community.

View the FASD-CAN website

 

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Latest Research

Prevalence of Fetal Alcohol Spectrum Disorders in Child Care Settings: A Meta-analysis
S Lange, K Shield, J Rehm, S Popova,  Journal of the American Academy of Pediatrics, doi: 10.1542/peds.2013-0066, published online 9 September 2013.  

This study looks at the prevalence of FASD among children and youth in child-care systems (including orphanages, foster care, and child welfare systems). The overall pooled prevalence of FAS and FASD among children and youth in the care of a child-care system was calculated to be 6.0% and 16.9% respectively. The researchers concluded that the results confirm that children and youth housed in or under the guardianship of a wide range of child-care systems constitute a population that is high-risk for FASD, making it imperative that screening be implemented in these at-risk populations. Read more


Alcohol consumption in pregnancy: results from the general practice setting
A Ni Shuilleabhain, J Barry, A Kelly, F O’Kelly, C Darker, T O’Dowd, Irish Journal of Medical Science, published online 10 August 2013.

This Irish study found that alcohol intake and binge drinking levels were much lower during pregnancy compared to the year prior to pregnancy. There was a marked reduction in the prevalence of alcohol use in pregnancy compared to previous research. Over 97 % drink no more than once a week, including almost two-thirds of women who abstain totally from alcohol in pregnancy. The research concluded that primary care is a suitable setting to research alcohol use in pregnancy. Read more


Prevalence of alcohol use before and during pregnancy and predictors of drinking during pregnancy: a cross sectional study in Sweden
J Skagerstrom, S Alehagen, E Haggstrom-Nordin, K Arestedt, P Nilsen, BMC Public Health, published online 27 August 2013, 13(1):780.

The prevalence of drinking during pregnancy is relatively low in Sweden. However, 84% of the women report drinking in the year preceding pregnancy and most of these women continue to drink until pregnancy recognition, which means that they may have consumed alcohol in early pregnancy. Of the women who were hazardous drinkers before pregnancy, 19% reduced their alcohol consumption when planning their pregnancy compared with 33% of the women with moderate alcohol consumption prior to pregnancy. Six factors were found to predict alcohol consumption during pregnancy, including older age, living in a large city, using tobacco during pregnancy, lower score for social support, stronger alcohol habit before pregnancy and higher score for social drinking motives. These factors should be addressed in the work to prevent alcohol-exposed pregnancies. Read more


Infant Emotional Withdrawal: A Precursor of Affective and Cognitive Disturbance in Fetal Alcohol Spectrum Disorders
CD Molteno, JL Jacobson, RC Carter, NC Dodge, SW Jacobson, Alcoholism: Clinical and Experimental Research, article first published online: 22 AUG 2013, DOI: 10.1111/acer.12240.

This study is the first to document a direct effect of fetal alcohol exposure on emotional withdrawal in infancy. These data link prenatal alcohol to a specific aspect of infant affective function not attributable to mother–infant interaction, infant temperament, or other socio-emotional aspects of the infant's environment and identify infant emotional withdrawal as an early indicator of affective disturbance, particularly in children later diagnosed with FAS and PFAS. Read more  


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Upcoming Events

For a full listing of upcoming events please go to our website.

NDIS ‘Choice and Control’ Webinar: 6 November 2013
This free webinar will explore the issue of ‘Choice and Control’: What do these terms mean to people with disability, their families and carers and those in the disability sector? The webinar will take place on 6 November 2013 from 1pm -2pm AEDT. To register or submit a question contact enquiries@ndis.gov.au or ring 1800 800 110.

 

Discussions about Alcohol Consumption during Pregnancy Webinar: 7 November 2013

Women’s Healthcare Australasia is presenting a webinar on alcohol consumption during pregnancy. The guest presenters will be Linden Rhodes and Dr Raewyn Mutch. The webinar will take place on 7 November 2013 from 2pm – 3pm AEDT. More information and to register  


Australasian FASD Conference and Preconference Event for Parents and Carers

Don’t forget to register for the Australasian FASD conference and the pre-conference afternoon and dinner we have planned especially for parents and carers. Please Contact Us if you require further information.  


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NOFASD Australia is supported by funding from the Australian Government under the Health System Capacity Development Fund.

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1300 306 238
enquiries@nofasd.org.au

Head Office
PO Box 206, Normanville , SA 5204

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