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NOFASD Australia
Issue #6, February 2014
Dear Members & Supporters,
Below are our key areas covered to keep you in The Loop,
This month in "The Loop"

Welcome to our February newsletter.

This month in ‘The Loop’, the importance of community advocacy is a feature.  NOFASD Australia campaigns on behalf of individuals and families living with FASD in affecting public policy, raising awareness of the risks of alcohol harms in the community and building the capacities of service delivery organisations to understand the particular needs of clients who may have undetected FASDs.  As parents and carers engage with systems in Australia, they advocate for understanding and empathy in respect to their children’s ability and capacity, and educate the community in the process.  This can be a daunting task and too often NOFASD Australia listens to personal experiences of dismissal of the important experience of living with FASDs as parents/carers.

NOFASD Australia encourages parents/carers and those whose role it is to teach, support and create opportunities for success to utilise the resources available on the NOFASD Australia website to help make this process less intimidating.  NOFASD Australia is currently developing an Advocacy Toolkit and if you have a story about what worked for you, some advice about content in the Toolkit or would like to be involved, please contact Terri at terri@nofasd.org.au or phone 1300 306 238.  Your privacy will be respected.

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


Just thinking…

There is an article in our international news and media section which I encourage you to read. If you do, I think you will find plenty to ponder. The article concerns legal action by a council in the UK claiming compensation for a child living with FAS based on the justification that she is the victim of a crime. The opposing view is included and is just as interesting and 700 blogs which follow raise a plethora of opinions and are worth scanning. I wonder what Australians would think if a similar scenario unfolded here? 

In the UK case, the legal challenge, if determined to be justified by the Court of Appeal, might warrant a counter claim by the mother against a government that profits from the sale of a legal drug and consumption by an adult and an industry which makes and markets the ‘poisonous’ product. The conclusion by Judge Levenson is provocative in that he ruled the child was “not a person” in legal terms because she was still “a foetus.” It is this fact which seems to have persuaded him to rule against the claim even though his finding was that the “administration of a poison…or other noxious thing…” resulting in grievous bodily harm was valid. Neil Sugarman, the solicitor handling the case, told The Telegraph: "Sadly, we act for many, many children who have been damaged by excessive alcohol intake during pregnancy.” Williams, in her opinion piece acknowledges 947 cases of FAS in a 4 year period and as alcohol consumption has not declined since 2008, I would suggest many more children are living with adverse fetal outcomes. Such data and the revelation by the solicitor of the numbers of children “damage” by alcohol would justify a next question about why is there no action about the alcohol product as a readily available and  accessible consumable?’ 

We must not forget that in addition to each of the 947 lives affected by fetal alcohol exposure, as many parents who used or are using excessive amounts of alcohol are struggling with more in life than addiction or dependency. Society displays its intolerance in notions of ‘good’ or ‘bad’ drinkers and ‘good’ or ‘bad’ mothers. But who is doing the naming? Alcohol is affecting personal health and personal lives across the lifespan and for some women (some mothers) attention/intervention comes as an additional burden when pregnant. Where is the empathy for women whose lives are saturated by violence, poverty and naming and blaming.

Then there are the many families who are caring for this population of children. They too live with FAS. Multiple agencies will support each of the children and their families and so it is a story which is tragically about cost. Financial burdens can be calculated and there will be winners and losers but cost is not just dollars.

A couple of issues stand out for me in the blogs following the opinion piece. The first is the debate FASD engenders on ‘gender’ responsibility.  The second is how FASD is linked with pregnancy termination. Perhaps both issues are part of the same piece. So many considerations in this story and I welcome your views. This is why FASD is known as a ‘conundrum’.

Vicki Russell
CEO, NOFASD Australia
vicki@nofasd.org.au


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Of Special Interest

The Importance of Advocacy

FASD is not just an issue for girls and women or ‘special’ population groups. FASD is a community concern and we all have a role in prevention. It’s an old story and often told but it is a useful reminder that change begins with one person speaking out. In his version, adapted from The Star Thrower, by Loren Eiseley (1907 – 1977), Peter Straube writes:

Once upon a time, there was an old man who used to go to the ocean to do his writing. He had a habit of walking on the beach every morning before he began his work. Early one morning, he was walking along the shore after a big storm had passed and found the vast beach littered with starfish as far as the eye could see, stretching in both directions. Off in the distance, the old man noticed a small boy approaching.  As the boy walked, he paused every so often and as he grew closer, the man could see that he was occasionally bending down to pick up an object and throw it into the sea.  The boy came closer still and the man called out,” Good morning!  May I ask what it is that you are doing?” The young boy paused, looked up, and replied “Throwing starfish into the ocean. The tide has washed them up onto the beach and they can’t return to the sea by themselves,” the youth replied. “When the sun gets high, they will die, unless I throw them back into the water.” The old man replied, “But there must be tens of thousands of starfish on this beach. I’m afraid you won’t really be able to make much of a difference.” The boy bent down, picked up yet another starfish and threw it as far as he could into the ocean. Then he turned, smiled and said, “It made a difference to that one!” and you can find it at http://eventsforchange.wordpress.com/2011/06/05/the-starfish-story-one-step-towards-changing-the-world/ 

NOFASD Australia often receives requests from parents and carers for helpful strategies to help raise public awareness and to advocate on behalf of their children as child, adolescent or adult. 

NOFASD Australia is developing an Advocacy Toolkit, to assist parents and carers in providing information on FASD to those who work with their children and the needs of their child such as teachers, police and medical professionals.  If you would like to assist in the content and structure of this Toolkit, please email terri@nofasd.org.au.  Further resources are available from our website.

As part of the NOFASD Australia commitment to supporting those who require assistance, a new page has been uploaded on the website called ‘Contact Your Local MP’.  It is your local MP’s job to represent you and everyone in your electorate – your stories are a powerful advocacy tool, and should be heard in order for you to be represented and supported.  

A sample letter, along with some tips for writing your letter or email, can be found here under the Policy & Advocacy section of the NOFASD Australia website.  NOFASD Australia encourages you to use this resource to write to your local Member of Parliament, and update us on your efforts and any responses.  If we can assist further in any way, please also let us know.

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National News and Media

East African Educational Presentations
Penny Bridge is a registered nurse and FASD Project Coordinator with Women's Health Statewide. She is a valuable supporter of NOFASD Australia. On the 6th February, Penny made a presentation on FASD to a group of the East African Visiting Fellows and advised participants were from various sectors and disciplines from Ethiopia, Tanzania and South Sudan. The group are visiting Australia to build service provider capacity aimed at improving the maternal and child health outcomes in East Africa.  The goal of their research in Australia is linked the Millennium Development Goals (MDGs) especially MDGs 5 (improve maternal health) and MDG4 (reduce child mortality). 

Women’s Health Statewide (WHS) Women’s and Children’s Health Network works closely with women from vulnerable backgrounds in SA including refugee and migrant women. Penny delivered a brief insight and invited discussion into FASD prevalence and its cultural context in sub-Saharan Africa. The session was very well received with a number of participants indicating that this was an emerging concern in some communities in East Africa and in turn for their migrant and refugee populations settling in Australia. 

Dr. Lillian Mwanri from the Discipline of Public Health, School of Medicine from Flinders University who facilitated the visiting Fellows provided this feedback following the session: “I caught up with some fellows and they were very happy that they have learned something they did not know at all. Some of them said they will start using the information to educate, especially the young women” [used with permission].


Fetal Alcohol Spectrum Disorder - Targeted Call for Research outcomes
In 2008, the then Prime Minister's Science, Engineering and Innovation Council released a report on Aboriginal and Torres Strait Islander health in which it was noted that the potential impact of alcohol and other drugs on the fetus were alarming and present a significant challenge in the Australian Indigenous community.
NHMRC opened a Targeted Call for Research (TCR) into Fetal Alcohol Spectrum Disorder among Aboriginal and Torres Strait Islander peoples on 14th December 2012 which closed on 10th April 2013.  Applications received during the call were peer reviewed by an expert panel of national and international researchers.
Following peer review, three applications were funded over $2.7M total by NHMRC.
  • Professor Stewart Einfield, University of Sydney - "Behaviour support training for Fetal Alcohol Spectrum Disorder" was funded $640,417.60
  • Professor Elizabeth Elliott, University of Sydney - "Building capacity for FASD screening and diagnosis through a prevalence study: The Cherbourg Project" was funded $693,728.85
  • Professor Caroline Bower, University of Western Australia - "Proving the management of youth with fetal alcohol spectrum disorder in the justice system" was funded $1,442,637.20.

NOFASD Australia would like to take this opportunity to congratulate the recipients of the above grants, and looks forward to seeing the results of the above research.  Read more...


Fetal Alcohol Spectrum Disorder Syndrome in Aboriginal communities [Audio]
Paediatric health expert Elizabeth Elliott wants future indigenous policy initiatives to address the pressing issue of Aboriginal women consuming alcohol during pregnancy.  Professor Elliott has just received a National Health and Medical Research Council grant for research into Fetal Alcohol Spectrum Disorder.  Listen now.


Lives and crimes: Kids who suffer fetal alcohol spectrum disorder
Research published in 2013 suggests many people with FASD will fall into a life of crime while still children.  A federal parliamentary inquiry in 2012 called for FASD to be officially recognised as a disability, stressing the need for better awareness among police, lawyers, judges and prison staff.  “A lot of kids that are in juvenile justice … may well be kids with fetal alcohol spectrum disorder,” says paediatrician at Sydney University, Professor Elizabeth Elliott.  Read more… 

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Resources
Electrical Engineer, Mother of two launches a new iPad app designed to help autistic children
‘Discovering Emotions with Zeely’, which is available now via the Apple AppStore, is an education tool designed to help children with autism learn how to identify emotions and practice recognising facial expressions.  Research has shown that a serious developmental hurdle for children with Autism (as well as ASD, Asperger’s, ADHD, FASD, Down’s Syndrome and Traumatic Brain Injury) is the inability to interpret and recognise facial expressions, in turn severely hampering their interpersonal skills. Read more… 


Fetal Alcohol Spectrum Disorders: How Can Courts Respond Effectively?
The Winter 2014 edition of The Judges’ Page Newsletter, published by the USA’s National CASA Association and the National Council of Juvenile and Family Court Judges, addresses FASDs in children, youth and adults involved in the justice system.  A number of articles, including “Navigating the System with FASD” and “Facing the Challenge: FASD and Frontline Policing” have been collated to provide an overview of the challenges faced by both those living with FASD and those working within the legal system.  Read more…  


Is it autism or FASD?
A short article containing a checklist of the differences between autism and FASD.  Read more...


FASD: Some problems start at birth, some start later
Similar to the above article, a checklist of characteristics that may be evident from birth and others that may not become obvious until later in life.  Read more...
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Latest Research

Meconium Screening for Fetal Alcohol Spectrum Disorder in Pregnancy
S.K. Clarren, MD, FAAP & J.L. Cook, PhD. MBA, Canada Fetal Alcohol Spectrum Disorder Research Network, March 2013
Identifying prenatal exposure to alcohol is important for prevention and diagnosis, but information about maternal alcohol consumption is often difficult to obtain.  It has been suggested that measuring the presence of fatty acid ethyl esters (FAEE) in meconium may be used as a “biomarker” to establish maternal problem drinking. Despite the promise of being a potential biomarker, there are some limitations.  Read more… 


Administration of Memantine During Withdrawal Mitigates Overactivity and Spatial Learning Impairments Associated with Neonatal Alcohol Exposure in Rats
N.M. Idrus, N.N.H. McGough, E.P. Riley & J.D. Thomas. Alcoholism: Clinical and Experimental Research, Volume 38, Issue 2, pp 529-537, February 2014
Both clinical and animal studies have reported binge drinking during development to be highly correlated with an increased risk of fetal alcohol spectrum disorders.  This study has investigated the effects of memantine, a clinically used NMDA receptor antagonist, on minimising ethanol-induced overactivity and spatial learning deficits.  The administration of memantine significantly lessened the ethanol-associated behavioural changes in a dose-dependent manner.  Therefore, memantine may be neuroprotective when administered during ethanol withdrawal. Read more… 


Licit and Illicit Drug Use During Pregnancy:  Maternal, Neonatal and Early Childhood Consequences
L Finnegan, Substance abuse in Canada: Licit and illicit drug use during pregnancy: Maternal, neonatal and early childhood consequences, 2013
The physical and mental health of a woman during pregnancy can have a pronounced impact on the wellbeing of her infant.  The influence on drugs on the central nervous system can reduce an expectant mother’s intellectual abilities, impair her decision making and undermine her care for herself and her infant.  
Read more:  Summary | Full Document 


Alcohol Exposure in Utero and Child Academic Achievement
S. von Hinke Keller Scholder, G.L. Wehby, S. Lewis & L. Zuccolo, NBER Working Paper Series, January 2014
This study by the National Bureau of Economic Research examines the effect of prenatal alcohol exposure (both generally and with regard to specific dose, pattern and duration of exposure) on child academic achievement. 
Results from the study prompted the researchers “to provide advice to policy makers, showing that low-to-moderate alcohol exposure in utero may have similar negative effects on the foetus that may be carried into childhood and adolescence”.  Read more…   


Detrimental Effects of Ethanol and Its Metabolite Acetaldehyde, on First Trimester Human Placental Cell Turnover and Function
S. Lui, R.L. Jones, N.J. Robinson, S.L. Greenwood, J.D. Aplin & C.L. Tower, PLoS One 9(2), 4th February 2014
A new report published by the UK’s University of Manchester reinforces what sensible pregnant women already know: drinking at moderate to heavy levels during the early stages of pregnancy may damage the development and function of the placenta, which supplies all the supporting nourishment a fetus requires during pregnancy.   This study has shown that short, acute exposure to ethanol, at levels readily achieved in a single sitting, negatively affects the earliest stages of placental development, with potentially major developmental effects for the fetus.  Read more…  


Chronic exposure to ethanol of male mice before mating produces ADHD-like phenotype along with epigenetic dysregulation of dopamine transporter expression in mouse offspring
P. Kim, S.C. Choi, J.H. Park, S.H. Joo, S.Y. Kim, H.M. Ko, K.C. Kim, S.J. Jeon, S.H. Park, S-H. Han, J.H. Ryu, J.H. Cheong, J.Y. Han, K.N. Ko & C.Y. Shin, Journal of Neuroscience Research (online publication prior to inclusion in an issue), 7 February 2014
This recent study investigates the effects of paternal exposure to ethanol before conception on the hyperactivity, inattention, and impulsive behaviour on male offspring in mice.  Sire mice were treated with ethanol in a range approximating human binge drinking for 7 weeks, and were mated with untreated female mice to produce offspring.  The results observed were an increase in ADHD-like hyperactivity, inattentiveness and impulsive behaviour in the offspring.  
Until now, fathers' lifestyle choices have not seen any repercussion on their unborn children. This ground-breaking research provides the first definitive evidence that fathers' drinking habits pre-conception can cause significant fetal abnormalities.  Read more…  


Exploring the feasibility of using electronic health records in the surveillance of fetal alcohol syndrome
C. Hansen, M. Adams, D.J. Fox, L.A. O’Leary, J.L. Frias, H. Freiman, F.J. Meaney, Birth Defects Research Part A: Clinical and Molecular Teratology, 12 February 2014
The purpose of this study was to explore the use of electronic health records (EHRs) in FAS surveillance systems – that is, using EHRs to identify possibly diagnoses and measurements related to the FAS criteria developed by the Fetal Alcohol Syndrome Surveillance Network (FASSNet) among children aged 0 – 12 years.  The prevalence of FAS as defined by FASSNet is 1.92 per 1000 children.  Results have shown that the use of EHRs in the identification of FAS may serve as a basis for intervention with at-risk children and in planning of future FAS surveillance programs.  Read more…  

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Upcoming Events

For a full listing of upcoming events please visit our events page on our website.

5th Annual National Disability Summit 2014 – Melbourne

DATE: 17th – 18th March 2014
DETAILS: Examining the theme of “Ensuring Sustainable & Successful Disability Reform through the NDIS”, the National Disability Summit presents a diverse program showcasing insights and case studies from individuals across the entire Disability Sector to give a realistic and insightful overview of the NDIS rollout to date, and recommendations for moving forward successfully. 
For further information and registration, click here. 


Empirically derived treatments for children and adolescents with FASD (Webinar)
NOFAS (USA) is hosting an online seminar (webinar) on the 19th March.  Register here. 
Free one-hour webinars will be offered by NOFAS on the third Wednesday of each month.


Youth Alcohol and Other Drugs Practice Summit - Melbourne
DATE: 28th March 2014
DETAILS: A must for youth practitioners in health, community services and government working with highly vulnerable young people and at risk young people, particularly those with substance use problems. Youth AOD treatment and early intervention is an emerging and specialised field.  It is increasingly important that effective approaches are identified and documented.  The Summit provides an opportunity for practitioners to both contribute their knowledge and to develop their understanding and skills in a range of areas that are critical to effective youth AOD service delivery.
For more information and registration, click here


2014 Network of Alcohol and other Drug Agencies (NADA) Conference – Sydney
DATE:  12th - 13th May 2014
DETAILS:  The 2014 NADA Conference: Diversity Driving Innovation in the non-government drug and  alcohol sector will focus on service responses to people with problematic substance use and  complex health and social needs. Hear from experts in the field, as well as the practice wisdom of other service providers. The concurrent sessions will be interactive with opportunities for conference participants to actively work with issues/topics being presented and networking with a diverse range of stakeholders and professionals from organisations providing these services to people with problematic substance use.  
For more information and registration, click here.  


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International News and Media

Drinking alcohol during pregnancy could be ruled a crime (UK)
Harming an unborn child by consuming alcohol during pregnancy could be classified as a crime if an unusual legal challenge succeeds.  A council is planning to go to the Court of Appeal in an attempt to secure criminal injuries compensation for a six-year-old girl who was born with fetal alcohol spectrum disorder as a result of her mother's drinking while she was in the womb.  Read more...
An opinion piece with an opposing view can be found here.


Number of UK alcohol-poisoned babies risen: Report (UK)

The number of babies being born with alcohol poisoning in Britain has increased significantly over the past years because of mothers with drinking habits, a new report shows.
Some 313 babies were affected by exposure to alcohol in the womb in the UK last year, up by almost three times when compared with data from 10 years earlier.  The study also found that the number of those affected by Fetal Alcohol Syndrome (FAS) in the country over the past two years has likely increased to 3,000 on the broader spectrum.  Read more...


"I drank alcohol throughout my three pregnancies, but should I have done?" (UK)
Almost 7,000 babies a year in Britain are now born showing signs of developmental damage due to their mothers drinking alcohol during pregnancy.  According to drinkaware.co.uk, it is the leading known cause of intellectual disability.  Read more...


Alaska group hopes to end fetal alcohol syndrome (USA)
It's one of the more persistent yet preventable afflictions in Alaska.  Every year hundreds of babies are born with brain damage to mothers who abuse alcohol during pregnancy.  A new campaign has started with the ambitious goal of ending fetal alcohol syndrome in Alaska, the state with the highest rate in the country.  "We have declared war on fetal alcohol syndrome," said Sen. Pete Kelly, a Fairbanks Republican.  Read more...
A further article from Alaska Public Media can be read here.


Drinking during pregnancy 'worse than smoking tobacco or cannabis' (UK)
Top doctors in the UK want the government guidelines changed to reflect evidence of the damage that alcohol can cause.  Paediatricians say as many as 1 percent of babies born in England suffer behavioural or developmental problems due to alcohol exposure.  Read more... 


One binge in pregnancy 'harms child years later': Children 'more likely to be badly behaved' if their mother drinks more than two glasses of wine (Denmark)
Just one night out during pregnancy can have long-lasting effects on the child's behaviour, a study suggests.  Youngsters exposed to one or two binges of alcohol in the womb were more likely to have short attention spans and be badly behaved at the age of seven, it said.  Read more...


Grant money to help people with fetal alcohol syndrome (USA)
Two organisations in Duluth, Minnesota, are among seven statewide receiving thousands of dollars in grants to help people born with fetal alcohol syndrome find jobs.  Goodwill Duluth and CHOICE, unlimited, both of which seek to provide work opportunities for adults facing challenges such as disabilities, recently learned that they will receive grants from the St. Paul-based Minnesota Organisation on Fetal Alcohol Syndrome.  Read more... 


Fetal alcohol fight in Crow Wing arms itself with new tool (USA)
A former educator is tired of seeing fetal alcohol-related behavioural and learning problems in children around the state.  Jody Crowe is now leading an effort to combat it in a new way: putting cellular technology-based breathalyzers in the hands of pregnant alcohol-involved teens and giving them incentives to stay booze-free.  He and others in the non-profit organisation he helped found, Healthy Brains for Children, are launching the program with leaders in Crow Wing County.  Read more...


Alcohol-exposed babies:  Why prevention is not as easy as 'just don't drink' (USA)
A personal opinion piece from Jill Burke about alcohol-exposed babies and FASD prevention.  Read more...


Facing the Just One Glass Myth:  Moderation is not prevention (USA)
An interesting, fact-based blog entry by Kenda Smith on FASD Prevention   Read more...


What you don't know about drinking and pregnancy: Four mothers tell their stories (USA)
Four women from the USA share their stories about drinking during pregnancy and living with FASD.  Read more...


Raising a child a challenge for Burlington couple (USA)
In 2012, Koby Cunningham was diagnosed with Alcohol Related Neurodevelopment Disorder (ARND).  “He doesn’t understand consequences, he doesn’t understand that if he does one thing what it could mean in the long run,” Lori Cunningham, Koby’s grandmother, says, as she describes what it’s like living with a child with ARND.  Read more...


The Real Cause of Foetal Alcohol Spectrum Disorder (USA)
FASD from a feminist point of view – women should have freedom over what they can and cannot do with their bodies, the conflict that arises when it comes to drinking during pregnancy, and where attention needs to be paid in the prevention of FASD.  Read more...


Alcohol & Me: Five things you should know about FASD (USA)
A video and short article from Deb Evensen, who has been educating school districts and other organisations about Fetal Alcohol Spectrum Disorders for more than 30 years in Alaska and beyond.    Read more...


The question is how to break the cycle of drinking to spare children alcohol damage (USA)
Anyone who's worked in the field of child or adult protection in this state is all too familiar with fetal alcohol spectrum disorder (FASD) and its even more devastating relative, fetal alcohol syndrome (FAS). Kids who otherwise might have had a chance for a good future if removed from an abusive and/or dysfunctional family have no chance of ever really escaping because of the damage done before they were born. No matter how hard they try, the crossed lines in their brain cannot be uncrossed. With a lot of work and effort, these kids sometimes are able to overcome the difficulties FASD produces and lead relatively healthy lives. But they will never ever achieve what might have been possible had alcohol not damaged them before they took their first breath.    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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