The Loop - e-news
National Organisation for Fetal Alcohol Spectrum Disorders Australia.
[ Issue #21, May 2015 ]
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Dear Members & Supporters,
This month in “The Loop”
An overwhelming number of articles this month are addressing FASD and its relationship with the Criminal Justice System.  With the recent overturning of New Zealand's Teina Pora's murder conviction on the basis of his diagnosed FASD, it begs the question: How many others are being wrongfully accused, and consequently serving prison time, because their FASD has not be diagnosed or recognised?  This question is explored in some of the articles below.

Also this month, we include the results of FARE's Annual National Alcohol Poll which, amongst other findings, reports that 50% of Australians are aware of FASD.  This is a fantastic number, but still not high enough to prevent the estimated 1% of babies being born affected by prenatal alcohol exposure.  It is also important to note that awareness is not synonymous with understanding – Australia still has a long way to go before it reaches a true knowledge of FASD.

Join us on Facebook and Twitter for consistent updates about the latest news and events, and as always, please share the NOFASD Community newsletter with your family and friends.

Until next time,

Terri Baran
Social Media & Administration Officer

NOFASD Australia does not necessarily agree with the articles below.  They are provided for interest purposes only.
 
From My Desk...
This month, I would like to update you on the National Parent/Carer Advocacy Group (NPAG), a new initiative aimed at providing a mechanism through which issues of concern can be raised to inform the work of NOFASD Australia and advocate for change. We are hopeful that in the near future, state and territory FASD parent networks will form providing the opportunity for parents to have a united voice. I am advised that the key issues of concern are: FASD as a registered disability and how to access the NDIS; dealing with the education/school system as the parent/carer of a child living with FASD; and the need for a national prevention campaign. These issues led me back to the ‘Call for Action’ written by parents and carers at a pre-conference meeting held in November 2013. The ‘Call for Action’ is a set of 14 recommendations and I am interested to hear from parents and carers on the progress you think has been made since that time. You can email me vicki@nofasd.org.au or phone 1300 306 238. If you only have mobile service let me know and I will call you back. The 14 recommendations are at the end of this section.

A parent advocacy kit is currently in development. The kit will be printed as a set of cards similar in size to brochures and will also be available online. Each card has information on both sides with different themes.  At this time these include: What is FASD; diagnosis; primary conditions, symptomatic behaviours and tertiary outcomes; characteristics across the lifespan – infancy, early childhood, early school age; middle school age, adolescence and adulthood. We are also aiming to include a section on adults with complex needs as this is a growing area of concern. There is a separate card on advocacy including strategies and another presents an example note that a parent might write to a teacher/service provider describing both the strengths and the needs of their child. Another card provides some ideas about and FASD Advocacy – Support Group which links to the NPAG described above. Finally, there will be a card on rights and resources. If you have experiences or ideas to share with other parents and carers about strategies that worked in advocating for your child/children, please let me know. You can email me vicki@nofasd.org.au or phone 1300 306 238. If you only have mobile service let me know and I will call you back. The parent advocacy kit is a ‘living’ resource which will grow over time.

This week I received an interesting article on stigma, the influence of stigma on FASD prevention and ethical implications. The research focuses on the impact on (i) personal responsibility and blame towards biological mothers; (ii) felt and enacted stigma experienced by children and their families; and (iii) anticipated life trajectories for individuals with FASD. For those who have access to journal articles, the reference is Bell, Andrew, DiPietro, Chudley, Reynolds & Racine Public Health Ethics 2015 “It’s a Shame! Stigma Against Fetal Alcohol Spectrum Disorder: Examining the Ethical Implications for Public Health Practices and Policies” 2015:1-13.

Vicki Russell
CEO


CALL FOR ACTION
Recognition
1. FASD must be officially recognized and understood as a disability. This is critical in order to be able to access services. 
2. FASD must be recognized by Governments (systems and services sector).
3. Every decision-making forum that relates to FASD must have parent/ carer representation
4. FASD must be acknowledged as a serious consequence of alcohol use. It is too often unrecognized when alcohol-related harms are discussed in public policy.  
5. Recognition of the cost burden to families. The cost burden to both families and services doesn’t make sense versus cost of prevention.
6. A national media campaign aimed at primary and secondary prevention. 
7. Equitable distribution of Government funds. Currently funds are biased towards disabilities such as Autism.
Education and training
8. Community-wide education undertaken and followed up at regular intervals to encourage tolerance and understanding across the community. 
9. FASD must be included in all training modules for professionals who work with children and adults who may have an FASD. The group placed a particular emphasis on better training for the education system.  
Redefining community expectations
10.Community expectations and understanding of ‘success’ for those living with FASDs must be reframed to acknowledge the strengths of individuals living with FASD. 
Birth parents
11. Birth parents do not want to be treated differently, they want respect and they want the truth. All professionals, particularly health professionals, must lose the stigma, ask questions and provide honest answers. 
Diagnosis
12.Individuals and families need child and family support services across the lifespan.
13.Diagnosis across the lifespan.
14.Assessment processes must be delivered by professionals familiar with the characteristics of FASD.
Of Special Interest
FARE's Annual Alcohol Poll 2015 – Aussies signal thirst for Government efforts
The nation's most comprehensive annual alcohol poll has shed light on what we drink and think, highlighting that Australians want to get rid of our boozy hangover and are looking to governments to take action. Now in its sixth year, the Foundation for Alcohol Research and Education's (FARE) Annual alcohol poll 2015: Attitudes and behaviours provides valuable trend data and insights into community perspectives on alcohol.  Read more...

Proceedings of the 2014 Annual Meeting of the Fetal Alcohol Spectrum Disorders Study Group
Reynolds JN., Valenzuela CF., Medina AE., and Wozniak JR., Alcohol, doi: 10.1016/j.alcohol.2015.02.009
The 2014 Fetal Alcohol Spectrum Disorders Study Group (FASDSG) meeting focused on the dual themes of the risks associated with low to moderate alcohol exposure during pregnancy and knowledge translation practices to enhance the impact of scientific research.  The meeting theme was titled "Low drinking versus no drinking: Matching science with policy and public perception".  Despite decades of basic science and clinical evidence that has documented the risks associated with prenatal alcohol exposure, there still exists confusion and uncertainty on the part of health professionals and the public regarding the question of whether or not there is a "safe" level of alcohol consumption during pregnancy.  Read more... 
National News and Media
Unpacking the alcohol poll
Australia's most comprehensive alcohol poll was launched in Melbourne last month, shedding light on what we drink and think.  If you missed the launch, or couldn't make it to Melbourne on the day, Drink Tank has you covered.  Watch as Herald Sun Editor Grant McArthur, consumer behaviour expert Dr. Paul Harrison, Triple J Hack reporter Joanna Lauder and FARE's Caterina Giorgi unpack the 2015 findings and discuss Australia's complex relationship with alcohol.  Read more...

FASD in the Criminal Justice System [NZ]
Children's Judge in New Zealand to talk about Foetal Alcohol Spectrum Disorder (FASD) in the Criminal Justice System. Judge Catherine Crawford, Children's Magistrate from Western Australia, is Guest Speaker at an FASD and Justice Forum hosted by Alcohol Healthwatch in Auckland next week.  The Judge is visiting New Zealand as part of a Churchill Fellowship to investigate how young people with FASD are accommodated within various judicial systems.  Read more... 

Insight:  New Zealand's Neglected Foetal Alcohol Problem [NZ]
Philippa Tolley investigates the scale of the burden caused by NZ's neglected foetal alcohol problem.  The damage that some babies can suffer when pregnant women drink heavily has again floated into the public consciousness after the Privy Council accepted that the then convicted murderer Teina Pora suffered from Foetal Alcohol Spectrum Disorder.  Read more...

Judge: NZ courts ill-equipped for foetal alcohol cases [NZ]
What's Fetal Alcohol Spectrum Disorder (FASD)? Had our courts known the answer twenty years ago, Teina Pora would have likely led a very different life.  The Privy Council's recent decision to quash the New Zealander's murder conviction has flung the general implications of failing to diagnose FASD right before the courts.  Read more...

How the justice system failed Teina Pora [NZ]
When Teina Pora's conviction for the 1992 rape and murder of Susan Burdett was quashed by the Privy Council in March it was the end of a long story. Right? Compensation was the only question remaining. Right? We could rest easy in the knowledge that the system had worked. Right? Except for a nagging question. Is what happened to Pora an indication of a justice system that needs help? The current and past justice ministers think not.  Read more...
Resources
When someone with an FASD is Arrested: What You Need to Know
A NOFAS Webinar presented by Dr. Paul Connor.
Although not everyone with an FASD gets in trouble with the law, research shows that these incidents occur far too frequently.  This webinar discusses research on how commonly troubles with the law occur for people with FASD, and how many of the cognitive difficulties that occur in FASD can lead to problems when interacting with police, attorneys, and judges.  Dr Paul Connor is a licensed clinical psychologist and neuropsychologist.  He specialises in cognitive and behavioural assessments of individuals with a variety of neurological impairments including FASD.  Watch the webinar here...

Foundations of Fetal Alcohol Syndrome
This overview of fetal alcohol syndrome (FAS) and fetal alcohol spectrum disorders (FASD) provides basic information on the biomedical, and clinical implications of prenatal alcohol exposure.  This is the first in an 8-part series from the University of Wisconsin Department of Family Medicine.  Watch the video here... 

Teens Raising Babies:  Supporting and Assisting Pregnant and Parenting Teens
Pregnant and parenting teens need support. They have to raise children when they are still children themselves.  They need lots of support, including social, medical, emotional, and academic assistance. The best help (i.e., help that is readily available from entities willing to assist in a reasonable, enlightened manner) generally comes from family, school, and community agencies. Read more...

FASD: Understanding the lack of understanding (and making progress)
Cheryl Channon, manager of the FASD Centre at the Regina Community Clinic, drew from her decade of experience working with those living with FASD while speaking to community workers and professionals at the University of Regina.

Dealing with congenital anomalies
Congenital anomalies are important causes of childhood death, chronic illness and disability.  They are also known as birth defects, congenital disorders or congenital malformations. Congenital anomalies can be defined as structural or functional anomalies that occur during intrauterine life. Read more...
International News and Media
Alcohol use in first 3-4 weeks of pregnancy may lead to permanent brain changes in offspring [Finland]
It is well established that consuming alcohol during pregnancy can cause harm to the fetus. Now, a new study finds that drinking alcohol as early as 3-4 weeks into pregnancy – before many women even realize they are expecting – may alter gene functioning in the brains of offspring, leading to long-term changes in brain structure. Read more...

Bruce/Grey Health Unit launches Alcohol and Pregnancy Don't Mix campaign [Canada]
Coasters with the message "Be safe. Have an alcohol-free pregnancy" are being distributed to licensed establishments throughout Grey Bruce this month.  The key message is not to drink any alcohol when planning and during pregnancy.  The coasters, from the Grey Bruce Health Unit and the Fetal Alcohol Neurobehavioural Leadership Team, target women who are planning a pregnancy or who are already pregnant.  Read more...

Yukon MP Ryan Leef's recommendations on FASD dropped [Canada]
A parliamentary committee has dropped recommendations proposed by Yukon MP Ryan Leef, which relate to how people with Fetal Alcohol Spectrum Disorder should be treated by the criminal justice system. In 2013 Yukon MP Ryan Leef brought forward a private members' bill called C-583 that would have allowed judges to order that people accused by assessed for FASD.  The bill would have legally defined the condition within the Criminal Code and would have allowed judges to consider FASD a mitigating factor in sentencing.  Read more...

UFV leads the way with play-based research [Canada]
Emily Smith* holds a handmade passport, and she's flipping from page to page. Some pages bear one or two small stickers as encouragement to keep trying her best. Others are adorned with bigger, glossy stickers and plenty of handwritten praise.  Smith, a Grade 5 student at Chilliwack Central elementary school, has fetal alcohol syndrome and attention-deficit-hyperactivity disorder.  Twice a week for one hour, Emily and 11 other kids ... get a break from their desks, from note taking, and from their teachers. They get to play, being as loud and moving as fast as they like, under the guidance of dozens of University of Fraser Valley kinesiology students. Read more...

Thoughtful Parenting: Alcohol use during pregnancy [USA]
It is important for women of childbearing age to be aware that if they drink alcohol while they are pregnant, there is a risk their fetus will develop problems associated with alcohol exposure. Alcohol in a woman's blood is passed to the fetus through the umbilical cord and can interfere with development during the pregnancy.  Consumption of alcohol, in any amount or at any time during a pregnancy, carries a risk of exposure. All kinds of alcohol are considered harmful.  Read more...

Unhealthy Behavior Among Teens Called 'Huge' Problem [USA] 
Drug and alcohol abuse during pregnancy that leads to serious birth defects is something health care providers have often warned the general public about, but the message often struggles to read pregnant teens – until now.  MotherToBaby, a service of the international non-profit Organization of Teratology Information Specialists (OTIS), announces a new initiative to reach this especially vulnerable population. Read more... 

Can drinking alcohol harm the child before the mother knows she is pregnant? [USA]
Alcohol drunk by a mouse in early pregnancy changes the way genes function in the brains of the offspring, shows the recent study conducted at the University of Helsinki. The early exposure was also later apparent in the brain structure of the adult offspring. The timing of the exposure corresponds to the human gestational weeks 3-6 in terms of fetal development. Read more... 

Alcohol during pregnancy harmful to the unborn child [Uganda]
Alcohol impacts people and societies in different ways and is determined by the volume of alcohol consumed, the pattern of drinking, and, on rare occasions, the quality of alcohol consumed. Alcohol is a psychoactive substance and its harmful use is known to have dependence-producing properties and can cause more than 200 diseases among drinkers as well as devastating effects to innocent victims such as unborn children. Read more...

Frontline workers trained in growing disability, FASD [Canada]
Despite more education around the topic, the number of children born with Fetal Alcohol Spectrum Disorder continues to rise around the world. About 70 front line staff involved in mental health, healthcare, justice and corrections took part in a free training session Monday [11 May] at the University of Regina. Read more...

Will Pregnancy Tests in Alaska Bars Dissuade Moms-To-Be From Drinking? [USA]
"Remember the last time you had sex? Were you drinking? Alcohol use during pregnancy can cause lifelong problems for the child."  That’s part of the warning on a poster in the women's bathroom at the Peanut Farm bar in Anchorage.  It depicts the silhouette of a pregnant woman guzzling straight from a bottle. And it's affixed to a pregnancy test dispenser hanging on the wall. 

Rising Star: Gymnast, 13, Sharpens Skills With Special Olympics [USA]
Mareena Mattison of Prospect Heights is a reigning gold medallist and No. 1 all around in the nation in Special Olympics gymnastics. The 13-year-old MacArthur Middle School student doesn't let her physical challenge stop her. Born with fetal alcohol syndrome, she came into lives of Prospect Heights residents Frank and Wendy Mattison when she was only 16 days old.  Foster care and adoption brought them together.  Read more...

Concern over high rate of Fetal Alcohol Syndrome [South Africa]
The rate of Fetal Alcohol Syndrome in South Africa is still amongst the most severe in the world.  The Western Cape government, farm workers and farm owners met on Tuesday night in Wellington to discuss these concerns. Watch the video here...

'I gave my children booze – and now I fear for their future' [South Africa]
Tammy-Ann Julies* remembers "feeding" her eldest son alcohol for the first time about two years ago.  It was a late Friday afternoon and the then eight-year-old Owen* and his mother shared a 750ml bottle of Black Label beer. They were sitting in a houthok [wooden shack] that Julies and her husband had built in the back yard of one of the pink and brown municipal flats in Roodewal, a mainly coloured township in the Cape Winelands.  Read more...

Central New York sees surge in binge drinking, especially among women [USA]
Binge drinking in Central New York is increasing among women at a faster rate than men, a trend experts say is alarming.  About 21 percent of Onandaga County adults were binge drinkers in 2012.  That's up 15 percent since 2005, according to a study published April 23 in the American Journal of Public Health.  The study tracks county level trends in alcohol use nationwide. Read more...

Binge drinking on the rise in northeastern LA (Louisiana) [USA]
A new study published in the American Journal of Public Health shows that drinking rates throughout northeastern Louisiana have increased over the past decade.  The study was conducted by phone and observed rates of any drinking, heavy drinking and binge drinking.  "We found that although the overall prevalence of any drinking has not changed substantially in recent years, there is evidence of an increase in both heavy drinking and binge drinking," the study states.  Read more...
Latest Research
Proceedings of the 2014 Annual Meeting of the Fetal Alcohol Spectrum Disorders Study Group
Reynolds JN., Valenzuela CF., Medina AE., and Wozniak JR., Alcohol, doi: 10.1016/j.alcohol.2015.02.009
The 2014 Fetal Alcohol Spectrum Disorders Study Group (FASDSG) meeting focused on the dual themes of the risks associated with low to moderate alcohol exposure during pregnancy and knowledge translation practices to enhance the impact of scientific research.  The meeting theme was titled "Low drinking versus no drinking: Matching science with policy and public perception".  Despite decades of basic science and clinical evidence that has documented the risks associated with prenatal alcohol exposure, there still exists confusion and uncertainty on the part of health professionals and the public regarding the question of whether or not there is a "safe" level of alcohol consumption during pregnancy.  Read more...
 
Early Maternal Alcohol Consumption Alters Hippocampal DNA Methylation, Gene Expression and Volume in a Mouse Model
Marjonen H., Sierra A., Nyman A., Rogojin V., Grohn O., Linden A-M., Hautaniemi S., and Kaminen-Ahola N., PLoS ONE, 13 May 2015, doi: 10.1371/journal.pone.0124931
The adverse effects of alcohol consumption during pregnancy are known, but the molecular events that lead to the phenotypic characteristics are unclear. To unravel the molecular mechanisms, The researchers used a mouse model of gestational ethanol exposure, which is based on maternal ad libitum ingestion of 10% (v/v) ethanol for the first 8 days of gestation. The results support [the] hypothesis of early epigenetic origin of alcohol-induced disorders: changes in gene regulation may have already taken place in embryonic stem cells and therefore can be seen in different tissue types later in life. Read more...

Correlates of partner support to abstain from prenatal alcohol use: a cross-sectional survey among Dutch partners of pregnant women
van der Wulp NY., Hoving C., and de Vries H.,  Health and Social Care., 5 May 2015, doi: 10.1111/hsc.12235
Partners can play an important role, but are often ignored in interventions targeting the prevention of prenatal alcohol use. A better understanding of the correlates of partner support to abstain from prenatal alcohol use can help to make a better use of partner support. The aim of this study was to identify correlates of this support by analysing differences between partners reporting low versus high support. Chi-square and t-test showed that partners reporting high support were more likely to desire their partner to abstain from alcohol use and to have received advice from their pregnant spouse or midwife that abstinence was desirable.

Voluntary Exercise Partially Reverses Neonatal Alcohol-Induced Deficits in mPFC Layer IIIII Dendritic Morphology of Male Adolescent Rats
Hamilton GF, Criss KJ., and Klintsova AY., Synapse, 12 May 2015, doi: 10.1002/syn.21827
Developmental alcohol exposure in humans can produce a wide range of deficits collectively referred to a FASD. FASD-related impairments in executive functioning later in life suggest long-term damage to the prefrontal cortex (PFC).  In rodent neonates, moderate to high levels of alcohol exposure decreased frontal lobe brain size and altered medial PFC pyramidal neuron dendritic morphology.  This study evaluates the effect of neonatal alcohol exposure on mPFC Layer II/III basilar dendritic morphology in adolescent male rats. It was found that voluntary exercise increased spine density and dendritic length in AE animals, resulting in elimination of the differences between AE and SH rats.  Thus, voluntary exercise during early adolescence selectively rescued alcohol-induced morphological deficits in the mPFC.
Upcoming Events
Second National Complex Needs Conference – Canberra, ACT
DATE: 17-18th November 2015
DETAILS: To be held at the Canberra Rex Hotel.
The Public Health Association of Australia (PHAA) – in conjunction with the National Complex Needs Alliance (NCNA) – invites you to participate in the second Australian conference to showcase successful programs/approaches in addressing complex needs – with the broader purpose of identifying what works and how.  The first conference in 2013 was a huge success, leading to the establishment of the NCNA.  
The Call for Abstracts is now open, along with registrations.  For more information, click here.
 
NOFAS International Gala: "Celebrating Healthy Babies" – Washington DC, USA
DATE: 17th September 2015
DETAILS: The 2015 NOFAS International Gala will be held at the Embassy of France in Washington DC.  Join NOFAS, FASD advocates from around the world, individuals and families living with FASD, friends of NOFAS, and leading lawmakers and members of the diplomatic corps to celebrate alcohol-free pregnancies and the achievements of children and adults living with FASD.  Honorary hosts, honorees, special guest, and more event details are coming soon. 
Tickets and sponsorships can be purchased on the NOFAS website, or to find out more about sponsorship opportunities and to pledge your support, contact Katelyn Reitz at NOFAS today.

Ottawa 2015 Brain Development Conference – Ottawa, Ontario, Canada
DATE: 19-21st September 2015
DETAILS: NeuroDevNets Annual Brain Development Conference is the premier North American meeting for understanding health and disorders in the developing brain.  Our sixth annual conference focuses on cross-cutting themes from a growing body of knowledge about neurodevelopmental disorders being generated within our network and through the groundbreaking research of our colleagues and collaborators.  Highlights include symposia on sleep and movement, and their multiple dimensions of impact on the lives of children with neurodisabilities and their families.  In his keynote address, Dr. Steven Scherer will shed light on how the sequencing of 10,000 genomes will change the landscape of autism research. A passionate discussion of the communication of risk will explore the ethical tensions in the treatment of neurodevelopmental conditions.

Accommodating Fetal Alcohol Spectrum Disorders 2015: Skills, Strategies and Supports – Vancouver, British Columbia, Canada
DATE: 15th October 2015
DETAILS: Front-line and primary care professionals working in Vancouver's Downtown Eastside (DTES) work to support clients who face living with an FASD, the difficulties of this compounded by co-occurring issues including addictions, mental health, and complex trauma to name just a couple. In order to better serve these clients, the knowledge of best practices in regards to relationship and engagement, understanding behaviour and developing effective interventions is crucial. This conference will focus on providing insight into the struggles that individuals living with FASD and other neurobehavioral disabilities face, while providing relevant and practical information for working with and alongside these individuals. The overarching goal of the conference is to provide skills and strategies that will support service providers to become an FASD-informed resource by providing inclusive and accommodative programming.

SAVE THE DATE – The 7th National Biennial Conference on Adolescents and Adults with FASD – Vancouver, British Columbia, Canada
DATE: 6-9th April 2016
DETAILS: "Research on Adolescents and Adults: If Not Now, When?"
To be held at The Hyatt Regency, Vancouver.
Advance notice & Call for Abstracts now available.
Although there have been thousands of published articles in FASD in general, there has been limited research specifically on adolescents and adults with FASD or on individuals across the lifespan.  As those individuals diagnosed with FASD continue to age, the "need to know" across a broad spectrum of areas is becoming critically important for identifying clinically relevant research questions and directions.  This interactive 2016 conference will provide an opportunity to be at the forefront of addressing these issues.
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