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NOFASD Australia
Issue #5, January 2014
Dear Members & Supporters,
Below are our key areas covered to keep you in The Loop,
This month in "The Loop"
Happy New Year to all NOFASD Australia network members! 

This year, NOFASD Australia will continue to maintain support services offered to individuals and their families and build community knowledge and understanding of the impact of FASD. NOFASD Australia will continue to deliver free community education sessions and low cost professional training in addition to continuing telephone consultant services to community organisations. Building community understanding and knowledge of FASDs through public education is vital for prevention. For those people (child, adolescent and adult) living with FASD, a better quality of life is a reality if knowledge and understanding is improved and the community works together. 

Too many Australians are using alcohol in patterns of drinking that are far from healthy. Many of these Australians are parents and grandparents, uncles and aunties, sisters and brothers. Some studies estimate 50% of parents are likely to have an unplanned pregnancy and unknowingly, alcohol may have been consumed. Recent research (Anderson et al 2014) referred to later in this newsletter, estimate 46% of the women who were drinking prior to their pregnancy will continue to consume alcohol, 55% of this group will continue drinking in binges and 47% as weekly drinkers.

In each New Year, concerned women contact NOFASD Australia. On confirmation of a pregnancy, they realise how much alcohol they have consumed during the Christmas/New Year holiday period. The message for parents about alcohol and pregnancy must be: “No alcohol in pregnancy or when planning a pregnancy is the safest choice.”

One of the major projects for NOFASD Australia in 2014 is the establishment of state and territory networks of support. NOFASD Australia recognises the challenge this poses and how critical to success the help and support of volunteers will be. If you are a parent or carer and wish to be involved, please make contact with me on 1300 306 238. Sharing your life skills and experience as parents/carers by making contact through a phone call to another parent or carer can really make a difference.  Whatever we can do to maintain the placement of a child in a family is the best protective factor in the lives of children living with a FASD. 

Vicki Russell
CEO, NOFASD Australia

PS:  Please remember to ‘Like’ NOFASD Australia on Facebook and share with your friends and family, as well as letting them know about the NOFASD Community newsletter.

Until next time,

Terri Baran
Administration Officer
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Of Special Interest
The First International Conference on Prevention of FASD was held in Edmonton, Canada, in September 2013

NOFASD Australia CEO Vicki Russell and National Policy Officer Leila Picken were fortunate to have the opportunity to attend this international event and both expressed the view that it was a proactive and educational experience. Outstanding speakers from around the world presented on a range of related topics and plenary presentations can be viewed at the IHE’s website

The following information on outcomes from the conference have been extracted from the Institute of Health Economics (IHE) circular.

The International Charter on Prevention of FASD, which was developed at the conference and endorsed by some 700 delegates, has been accepted for publication in The Lancet – Global Health.  Whether this will be published is uncertain at this time but if it progresses, organisers suggest it is likely to be in early 2014.  The published Charter will present an important milestone in the work as a global community concerned with the prevention of FASD, and urges us all to come together with a renewed and expanded commitment to continue our various efforts.  NOFASD Australia will keep you informed.

The conference organising committee is currently determining the level of interest in establishing an International Society on FASD in order to determine its viability. If you are interested in joining the Society as a founding member, please contact Egon Jonsson at the Institute of Health Economics (IHE) in Edmonton Canada. The more individuals and organisations who register their interest the better.  IHE advises the establishment of such a Society would be beneficial in bringing about further awareness and prevention of FASD, and the associated publication would facilitate sharing the research being carried out in this area to the advantage of those living with FASD. There is possibility of an International Journal.

Sourcing funding for a second Conference, planned for 2015, is in progress.  Any suggestions about funding and organising the conference elsewhere in the world would be appreciated – please contact the IHE should you have recommendations.
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National News and Media
Aboriginal and Torres Strait Islander FASD Resources Project
A number of electronic resources resulting from a recent project by the National Drug Research Institute at Curtin University are now available for use by health and other interested professionals. 
The ‘FASD PosterMaker’ can be downloaded as an app for iPad from the Apple App Store (search for ‘FASD Postermaker’).  The web version is available at www.fasdpostermaker.com.au.
There is an evaluation survey build into the resource.  Those who use the application are asked to complete the survey to improve this resource in the future. Alternatively, feedback can be emailed to Lynn Roarty, Ph.D. at Curtin University.

Why we need to fight against FASD
Following his experience working as a paediatrician with people living with FASD, Dr James Fitzpatrick explains why he believes so strongly in the Pregnant Pause campaign.  Read more…

The cost of one FASD disability support over a lifetime estimated at $15M
Drug & alcohol professionals have renewed angry protests at the withdrawal of $1.6m annual funding from Alcohol and other Drugs Council Australia (ADCA), just as police launch major operations against alcohol-fuelled violence. 
ADCA was a contributor to the government’s report into FASD, FASD: the Hidden Harm in 2012, and a 2011 inquiry into FASD,. ADCA has been involved in education and awareness campaigns to ensure mothers know about the dangers of drinking while pregnant.  ADCA argues that a single case of fetal alcohol syndrome could cost the government considerably more to manage than an entire year’s funding.  Read more…

FASD Diagnostic Service
Child Development & Behaviour Service as been established in Bundall, QLD, and is now accepting referrals of children aged 0-10 years for diagnostic assessment.  Contact the clinic on (07) 5570 8553 or write to the Child Development & Behaviour Service at PO Box 5699, Bundall QLD 9726.
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Resources
Aboriginal and Torres Strait Islander FASD Resources Project
A number of electronic resources resulting from a recent project by the National Drug Research Institute at Curtin University are now available for use by health and other interested professionals. 
The ‘FASD PosterMaker’ can be downloaded as an app for iPad from the Apple App Store (search for ‘FASD Postermaker’).  The web version is available at www.fasdpostermaker.com.au.
There is an evaluation survey build into the resource.  Those who use the application are asked to complete the survey to improve this resource in the future. Alternatively, feedback can be emailed to Lynn Roarty, Ph.D. at Curtin University.

FASD Diagnostic Service
Child Development & Behaviour Service as been established in Bundall, QLD, and is now accepting referrals of children aged 0-10 years for diagnostic assessment.  Contact the clinic on (07) 5570 8553 or write to the Child Development & Behaviour Service at PO Box 5699, Bundall QLD 9726.

Circle of Hope (COH)
The Circle of Hope (COH) network was established in the USA in 2004.  Click here to find out more about this support network for women who consumed alcohol during pregnancy and may have a child or children with FASD.  The women support one another in recovery and/or through the challenges of parenting a child with FASD.  The COH page has various videos from birth mothers to help inspire health, hope and happiness amongst those living with FASD.  You can join the COH by emailing Kathy Mitchell.

Knowledge Exchange Network (KEN)
The Canadian Association of Paediatric Health Centres has established the Knowledge Exchange Network (KEN), a national online information exchange and community for parents and professionals.  There are numerous resources available to all, including various recorded presentations.  One session covers the topic of Children's Pain, while another covers FASD Screening. Permission has been granted for open access to these resources.
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Latest Research
International Journal of Alcohol and Drug Research
Volume 2, Issue 3 is a special issue featuring a selection of research in the FASD field, including Exploring the prevention of Fetal Alcohol Spectrum Disorder in the Northwest Territories of Canada, and Fetal Alcohol Spectrum Disorder service delivery: Exploring current systems of care from the caregivers’ perspective.  All research is available as a PDF download.  Read more…

Evaluation of a three-year Youth Outreach Program for Aboriginal youth with suspected Fetal Alcohol Spectrum Disorder
C. Hubberstey, D. Rutman, S. Hume, International Journal of Alcohol and Drug Research, 23 December 2013
Discusses the process, findings and lesson learned from the external evaluation of the Youth Outreach Program (YOP), a three-year intensive outreach and support program intended for at-risk Aboriginal youth, 13-18, with characteristics and/or behaviours associated with Fetal Alcohol Spectrum Disorders.  The sources of data revealed that the YOP lead to a number of positive outcomes for at-risk youth in areas of safety, relationships, school attendance, sexual health, substance use, and knowledge and use of community resources.  Read more…

Fetal alcohol syndrome heart defects may be caused by altered function, not structure
G. Karunamuni, S. Gu, Y.Q. Doughman, L. Peterson, K. Mai, Q. McHale, M.W. Jenkins, K.K. Linask, A.M. Rollins, M. Watanabe, American Journal of Physiology – Heart and Circulatory Physiology, 22 November 2013
Co-occurring with growth retardation, head and face abnormalities, and neurological problems, FAS also causes heart problems in just over half of people living with this condition. Though much research has focused on looking for the cause of these alcohol-induced heart defects, the cause remains a mystery.  In this study, heart formation in quail embryos was closely monitored, looking at how alcohol changed both the function and the structure of the heart.  The study found that significant changes in heart function appeared to come well before changes in structure.  These changes in function might be the cause of the structural problems that arise later, by exerting forces on the heart that change its development.  Read more… 

“Scientists now believe they are one step closer to proving that even one drinking episode could endanger a developing fetus…”
Cited from Medical News Today, Ganga Karunamuni, Ph.D., Case Western Reserve University leader of the research team advises, “Using optical coherence tomography (a new technology that works a lot like an ultrasound, but returns high-resolution images on the micron scale and light instead of sound), they took a look at tiny embryotic hearts exposed to alcohol and compared them with hearts that hadn’t.  What they found may rival every shred of doubt that alcohol has a negative effect on an unborn baby.” Read more…

Risky Drinking Patterns are being Continued into Pregnancy: A Prospective Cohort Study
A.E. Anderson, A.J. Hure, P.M. Forder, J. Powers, F.J. Kay-Lambkin, D.J. Loxton, PLoS ONE 9(1),  15 January 2014
This study looks into the characteristics of women that partake in risky drinking patterns before pregnancy and examines how these patterns change once they become pregnant.  Risky patterns of alcohol use prior to pregnancy increases the risk of alcohol-exposed pregnancies and subsequent adverse outcomes, so it is important to understand how consumption changes once women become pregnant.  The result of the findings was that over one-third of women continued risky drinking into pregnancy, especially binge drinking, suggesting a need to address alcohol consumption prior to pregnancy.  Read more…

Messages that increase women's intentions to abstain from alcohol during pregnancy: results from quantitative testing of advertising concepts
K.E. France, R.J. Donovan, C. Bower, E.J. Elliott, J.M. Payne, H. D'Antoine & A.E. Bartu, BMC Public Health, 13 January 2014
Public awareness-raising campaigns targeting alcohol use during pregnancy are an important part of preventing prenatal alcohol exposure and Fetal Alcohol Spectrum Disorder. Despite this, there is little evidence on what specific elements contribute to campaign message effectiveness. This research evaluated three different advertising concepts addressing alcohol and pregnancy: a threat appeal, a positive appeal promoting a self-efficacy message, and a concept that combined the two appeals. The primary aim was to determine the effectiveness of these concepts in increasing women’s intentions to abstain from alcohol during pregnancy.
Women of childbearing age and pregnant women residing in Perth, Western Australia participated in a computer-based questionnaire where they viewed either a control or one of the three experimental concepts. Following exposure, participants’ intentions to abstain from and reduce alcohol intake during pregnancy were measured. Other measures assessed included perceived main message, message diagnostics, and potential to promote defensive responses or unintended consequences.  Read more...

Association between pre- and perinatal exposures and Tourette syndrome or chronic tic disorder in the ALSPAC cohort
C.A. Mathews, J.M. Scharf, L.L. Miller, C. Macdonald-Wallis, D.A. Lawlor & Y. Ben-Shlomo, British Journal of Psychiatry (online), 21 November 2013
Tourette syndrome and chronic tic disorder are heritable but aetiologically complex.  Although environment plays a role in their development, existing studies of non-genetic risk factors are inconsistent.  This study examines the association between pre- and perinatal exposures, such as alcohol and cannabis, and Tourette syndrome or chronic tic disorder.
The findings support previously reported relationships between Tourette syndrome/chronic tic disorder and prenatal alcohol exposure, and identifies additional previously unexplored potential prenatal risk factors.  Read more...

The Language Profile of School-Aged Children with Fetal Alcohol Spectrum Disorder (FASD)

S Proven, C. Ens & P.G. Beaudin, Canadian Journal of Speech-Language Pathology and Audiology, Volume 37, No. 4, Winter 2014
A population-based study of school age children diagnosed with FASD was conducted to evaluate the language abilities of these children and describe their language strengths and weaknesses.  A retrospective chart review methodology was applied to examine language abilities of children diagnosed with FASD. Secondary data from 124 children aged 5 to 18 years, who were diagnosed with FASD between January 2005 and October 2010, were included in the study. Results from the CELF-4 language assessment tool were analyzed to compare the language abilities of these children. This study revealed globally poor performance across expressive and receptive language abilities, suggesting that language development is significantly affected by prenatal alcohol exposure.
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Upcoming Events
For a full listing of upcoming events please visit our events page on our website.

NDIS Community Forums
The National Disability Insurance Scheme is hosting various Community Forums around New South Wales in February 2014.  The Forums are intended to provide detailed information about the NDIS, how to become involved with the Scheme and provide an opportunity to meet members of the local NDIS team and ask questions.  We assume that Forums will be held in other states and territories in the coming months – to see if one is near you soon, please visit the NDIS Events page.

Venue:  Belmont 16’ Sailing Club, The Parade, Belmont
Date: Tuesday 4th February 2014
Times:  10am – 12pm and 5:30 – 7:30pm

Venue: East Maitland Bowling Club, Cnr New England and Banks St, East Maitland
Date: Wednesday 5th February 2014
Times: 2– 4pm and 5:30– 7:30pm

Venue: Newcastle Jockey Club, Darling St, Broadmeadow
Date: Thursday 6th February 2014
Times:  10am – 12pm and 5:30—7:30pm
(A Provider Forum will also be held at this location between 2 – 4pm this same day)

Deaf Community Forum
Venue: Kahibah Sports Club, 63 Kenibea Ave (cnr Kenibea and Kahibah Rd), Kahibah
Date: Wednesday 26th February 2014
Time: 1:30 – 3:30pm

To see if you are able to access assistance from the National Disability Insurance Scheme, use the My Access Checker available on the NDIS website.

Strong Spirit Strong Future one-day FASD training
The SSSF team deliver one-day workshops throughout Western Australia and target service providers who work with Aboriginal women of childbearing age, their families and communities.  This training is provided free of charge and also attracts 6 Royal College of Nursing Australia (RCNA) CPD points for members.  The workshop offers information on FASD, prevention strategies and skills for working with Aboriginal women of childbearing age.  A central focus will be the use of culturally secure resources developed for reducing use of alcohol during pregnancy.
Leonora Training
Tuesday 11th February 2014, 8am - 3pm
Community Health - Tower Street, Leonora
Enquiries to Jane at GCADSBTC@hopecs.org.au

Laverton Training
Wednesday 12th February 2014, 8am - 3pm
LLCCA - Euro Street, Laverton
Enquiries to Jane at GCADSBTC@hopecs.org.au

THE CIFASD: From the Lab to Changing Lives (Webinar)
NOFAS (USA) is hosting an online seminar (webinar) on the 19th February.  Register here.
Free one-hour webinars will be offered by NOFAS on the third Wednesday of each month.


Families & FASD
The Women's Council for Domestic and Family Violence Services WA are hosting 'Families & FASD'.  This training will explore a number of issues relating to FASD, outlining the drinking culture we have in Australia, WA policy surrounding the issue of FASD and how the federal government is acting to reduce in the incidence of FASD.  It will suggest ways to identify FASD in children, how to help mothers manage FASD and also how to help in the prevention of FASD by suggesting strategies that pregnant women can use to avoid alcohol use.  The training will also cover physiological responses that fetuses have when exposed to alcohol, how FASD can impact on a child's development (physically, socially and emotionally), how to work with pregnant clients that have experienced domestic and family violence and drink alcohol to cope, teaching healthy habits and analysing co-morbidities between FASD and other developmental issues children exposed to alcohol may face.  Working with Aboriginal women will also be a key focus of this training. 
Wednesday 26th February 2014
City West Lotteries House, 2 Delhi St, West Perth
9:00am - 3:00pm
Please RSVP by 14th February.
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International News and Media
Author:  Kieran D. O’Malley (Child & Adolescent Psychiatrist, Our Lady’s Children’s Hospital, Crumlin Charlemont Clinic, Dublin, Ireland)
Please note that individuals, groups or libraries with an interest in the field are entitled to a special 40% discount on all prepublication orders.  Please email Tricia Worthington and enter Prepub40 in the subject line of the email.  An e-book version will be simultaneously available with the printed version.  Electronic leaflets are available by request for your dissemination.

Nile Breweries: don’t sell beer to pregnant women (Uganda)
Nile Breweries tightened its supervision of alcohol distribution this festive season with a bold campaign that urges bar owners and retailers not to sell alcohol to pregnant women and other restricted groups.  Corporate Affairs Director Onapito Ekomoloit said, “Reducing alcohol abuse is the number one priorty among our sustainable development priorities.”  Read more…

Lawyers push for more support for FASD (Canada)
The Yukon branch of the Canadian Bar Association wants the territory to become the first jurisdiction in the country to write human rights language directly into the Corrections Act.
The group is calling for an amendment stating explicitly there is a “duty to accommodate” people with fetal alcohol spectrum disorder within the correctional system.  Read more…

Pregnancy Test Kits In Pub Toilets (UK)
The FASD Network, which was set up in Stockton by Maria Catterick who fostered numerous children affected by fetal alcohol spectrum disorders, is campaigning to have pregnancy testing kit dispensing machines installed in pub toilets.  Read more… 

OPINION: FASD support offered (New Zealand)
Dr Jenny Salmon, RCpN, BN, PhD, of Vauxhall, makes some points about the diagnosis and treatment of fetal alcohol spectrum disorder in the South Island. Read more…

More counselling needed to reduce pre-pregnancy alcohol use (USA)
The Oklahoma State Department of Health (OSDH) reminds women who are pregnant or could become pregnant that alcohol use during pregnancy is a leading cause of preventable birth defects and developmental disorders in the United States. 

Health ministry to stop smoking, drinking during pregnancy (Nepal)
The Ministry of Health and Population is to implement a special program to check the trend of smoking and drinking alcohol by women during pregnancy.
According to the Ministry, nearly 17 per cent women drink and 16 per cent women smoke during pregnancy. More women are found to drink alcohol during pregnancy in eastern part of the country and more women are found to smoke during pregnancy in the western part.

Registered nurses call for provincial strategy to address FASD (Canada)
"Too often, children and adults living with developmental disabilities fall through the cracks.  This is especially true for those living with FASD", says the Registered Nurses’ Association of Ontario.  They are gathering information on how to tackle the urgent requirement for a comprehensive strategy to address the needs of children, youth and adults in Ontario with an intellectual (developmental) disability.  Read more…

MP uncovers massive rise in alcohol impacted tots (UK)
Burton’s MP has called for more support for expectant mothers with a drinking problem after he uncovered a shocking rise the number of babies born deformed or disabled as a result.  Andrew Griffiths called on the Department of Health to look at ways to better educate women about the dangers of drinking while pregnant.  The parliamentarian found that medics across the UK dealt with 313 cases of fetal alcohol syndrome last year, which had risen by a shocking 48 per cent.

FASD requires more than talk (Canada)
Researchers have long insisted women and girls typically don't want to do anything to harm their unborn children. However, information on the risks of alcohol consumption during pregnancy is only part of the message.  Educators must provide proper sex education to reinforce the message that girls and women have the right to determine what happens with their bodies.  FASD researchers have suggested that women who pose the highest risk tend to be in their 30s, have more than one child, are marginalized in their communities, are sexually abused and encouraged by partners not to use contraception in order to assure fidelity.

Journal on Developmental Disabilities (Canada)
Volume 19, Issue 3:  The Special Collaborative Issue on FASD has been produced collaboratively by the First People's Child and Family Review and the Journal on Developmental Disabilities (JODD).  This Special Issue presents original research reports, literature reviews, environmental scans, media reviews, artwork and messages from people with FASD and those supporting.  Together they offer a broad perspective on the topic including information and commentary from academics, clinicians, community service providers, advocates, individuals and family members living in diverse communities across Canada.  Read more...
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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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