The Loop - September 2014
National Organisation for Fetal Alcohol Spectrum Disorders Australia.
[ Issue #13, September 2014 ]
More News
Dear Members & Supporters,
This month in “The Loop”
September 9th was International FASD Awareness Day, and the final official day of our campaign encouraging the public to join the pledge to not consume alcohol on this day in support of FASD awareness.

NOFASD Australia was involved in a number of events, including a morning tea, a breakfast at a local Child and Family Centre in Tasmania, and Vicki flew all the way to Western Australia to present a community workshop in Kalgoorlie.  Thank you to everyone who joined in with these events, and we look forward to even bigger and better events next year.

A huge amount of articles and information came through the pipelines this month thanks to FASD Awareness Day - we can only hope this momentum continues over the coming months and awareness and understanding of FASD reaches even further.

Don't forget to join us on Facebook and Twitter.  And as always, please share the NOFASD Community newsletter with your family and friends.

Until next time,
Terri Baran
Social Media & Administration Officer

An important request from the NDIS Evaluation Team…
We write to ask for your support in an important phase of the evaluation of the trial of the NDIS conducted by the National Institute of Labour Studies at Flinders University. 
Letters inviting people with disability to register for the NDIS Survey are being sent out to several thousands of people who are already in the NDIS and to others who may join the NDIS in the future asking them about their experiences. 
We need information about the NDIS Survey to be as widely available and taking part in the survey to be as accessible as possible, so that as many people with disability as possible can make their views known.
You can help us achieve a high response rate by encouraging and helping your members or those using your services to register for the NDIS Survey if they have received a registration pack.
The voice of every single person with disability that your help could encourage to respond to the survey matters!  
We wonder if you could circulate through your networks or members a short message about the survey and the registration to help raise awareness about the NDIS Survey and encourage people to take part in it.  
You can find more information about participating in the survey from this link:  www.ndisevaluation.net.au/ndissurveyinformation.

Warm regards,
NDIS Evaluation Team
National Institute of Labour Studies
Flinders University
 
From My Desk...

International FASD Awareness Day happened this month and I was in the Goldfields Region of WA. I have to say that the group of health promotion team working on the prevention of FASD are passionate and committed to raising awareness of FASD led by Dr Anne Mahoney and Yasir Arfat. Particular thanks to Paramjit Kaur, the FASD Project worker who did a fantastic job in co-ordinating three sessions in Kalgoorlie, one in Norseman and two in Esperance. The 9/9 opened with a BreakFASD for obstetricians.  Dr James Fitzpatrick was able to join the event by video conference and presented an overview of FASD and the diagnosis. This was followed by a lunch for over 20 health workers followed by a ‘pregnant pause’ on the bridge. An evening session for interested community members included stalls set up by local community workers. The following day we travelled to Norseman and although the audience was small, the questions were great. Then it was on to Esperance and a BreakFASD on Thursday morning for local medical practitioners and midwives followed by a second workshop for health and allied health workers at the hospital. Overall, more than 100 people attended these events. The Goldfields Region has adopted the WA Model of Care and implementing their plan for prevention.  The evaluations were very positive and indicate most learnt something new and many already had ideas about how this new information could be incorporated into their practice.  See some photos from this event.


A special thanks to NOFASD Australia volunteer educator and advocate Amanda Mulligan and her family members and supporters, who donated their time at Macquarie University in NSW to raise awareness of FASD wearing bright pink T-shirts, emblazoned with the message “We are in this together – your baby drinks what you drink.”  In Tasmania, Terri, our social media person, organised a small gathering for morning tea in Devonport and Adelle, our national educator arranged a breakFASD at a child and family centre. Across the ditch, a FASD Symposium at the University of Auckland Tamaki Campus gathered to listen to Canadian international Guest speaker Dr Jocelyn Cook.   We joined and international consortium organised by NOFAS and EuroFASD. 


Together with Fostercare NT, our first face to face support group is happening. I urge any parent or carer to contact me if interested in building a similar support group in their own community. Sharing your knowledge and experience with others is vital. As one carer noted,


We felt like we were losing Jane to more of the FASD disability. After seeing the paediatrician, Jane is now on different prescribed medication and we have already noticed a big improvement. We are getting peace in the home now and routines are running a lot smoother.  There haven’t been any meltdowns so far. If Jane has a ‘brain shift’ on the new medication, she seems to have better self-control to be able to meet our requests. She is showing no side effects to the new medication and the headaches and drowsiness seem to have disappeared. Most importantly, Jane has her personality back; she is getting dressed for school, eating breakfast, lunch and dinner and is a lot happier and pleasant. We have more of the whole Jane now. As her primary carer, I'm so much at peace now and in much better place, as it was so stressful and extreme. There were no breaks and it was so upsetting to see Jane suffering like that.

I'm smiling at her right now and she's a real sweetie.  Jane received a School Award today at the school assembly, (for asking for help in the class room). As Jane wasn't able to do that before, it was a concern for her teacher. Jane would race off to do her work, not really knowing what she was meant to be doing or what the task was.  Receiving the Award today shows how a different medication can work. I know there will be ups and down days, but the days are a lot more manageable now for me and especially for Jane. If there wasn't a support group, I would have not known of this medication from one of the other support group members and Jane, I and our family would be still suffering high stress.

[Note: Names have been changed. Mary is a kinship carer and Jane is 8 years old.]


With the aid of electronic media, even those in rural and remote communities can join in.


Vicki Russell
CEO, NOFASD Australia

Of Special Interest
We have collated many (but certainly not all!) of the different news articles relating to International FASD Awareness Day that have appeared online this month.  The sheer amount of articles, listed below, is a testament to those who work tirelessly to prevent future generations from living with FASD.

Alcohol during pregnancy
On the eve of Fetal Alcohol Spectrum Disorder Awareness Day, the Taranako District Health Board wants to remind pregnant women as well as those women planning to become pregnant to avoid all alcohol.  Read more… 

Too Young To Drink… Powerful FASD Awareness Campaign Shows Baby Immersed in Alcohol
September 9, the 9th day of the 9th month, at 9:09am, on the occasion of the International Fetal Alcohol Spectrum Disorders Day, the EUFASD (European FASD Alliance) launched #TooYoungToDrink, a provocative, international campaign designed to raise awareness of the risks of FASD (Fetal Alcohol Spectrum Disorders).  As reported in a Design Boom piece on the campaign, "Studies in the United States reveal that about 1% of children are affected by FASD; in Europe show at least 2%; even higher numbers are evident in parts in South Africa."  Read more…

FASD awareness day aims to educate women not to drink a single drop while pregnant
'An ounce of prevention is worth a pound of cure' goes the saying —and it was the message on Tuesday as part of Fetal Alcohol Spectrum Disorder Awareness Day.  "We're here trying to get the word out that no alcohol during pregnancy is the best," said Danielle Schaitel, regional FASD programs manager with Bridges Family Programs, who alongside coworkers were set up at Medicine Hat College.  Read more…

NIH Statement on International FASD Awareness Day
International FASD Awareness Day is recognised every year on Sept. 9th is an important reminder that prenatal alcohol exposure is the leading preventable cause of birth defects and developmental disorders in the United States.  Almost 40 years have passed since we recognised that drinking during pregnancy can result in a wide range of disabilities for children, of which fetal alcohol syndrome (FAS) is the most severe.  Yet, 1 in 13 pregnant women report drinking the past 30 days.  Read more… 

Local Bars and Restaurants Urge Pregnant Women Not to Drink
All things in moderation, the saying goes, but if you are a pregnant woman no amount of alcohol is known to be safe for the developing baby.  To get the word out that alcohol and pregnancy don’t mix, volunteers with the Southern California affiliate of the National Organization on Fetal Alcohol Syndrome (SoCal NOFAS) are handing out “Pregnant? Don’t Drink” coasters to San Diego area bars and restaurants on Tuesday, September 9th.  Read more…

Mocktails help raise awareness for FASD
For the fifth year in a row, local establishments brought their best mocktail (non-alcoholic) shot to the Dr. Duncan Recreational Centre for the annual FASD Mocktail event.  The competition of flavours was highlighted this year by Mayor Rob Mackin declaring Sept 9 FASD Awareness Day in Hinton.  Read more…

September Recognized as FASD Awareness Prevention Month in Ohio
When a pregnant woman drinks alcohol, so does her unborn child. Each year, nearly 40,000 children are born with physical, mental, behavioral and/or learning disabilities with lifelong implications due to prenatal exposure to alcohol.  These children are born affected by Fetal Alcohol Spectrum Disorders (FASD), the leading known causes of preventable birth defects according to the U.S. Surgeon General. Incredibly, some researchers estimate that as many as one in 100 babies have FASD, nearly the same rate as for autism!  Read more…

Psychology Students and Faculty Support FASD Awareness Day with Governor Deal
Clayton State University’s Applied Developmental Psychology Graduate Students and Associate Professor/Applied Developmental Psychology Coordinator Dr. Samuel J. Maddox recently had the opportunity to support Georgia Governor Nathan Deal’s Fetal Alcohol Spectrum Disorder Awareness Day Proclamation. Maddox and the Clayton State students met with Deal at the state capitol for a photo opportunity. In attendance from Clayton State were Maddox and students Erin A. Stewart, Taleesa Peck, April Marie Daniels and Maria Morales-Beale.  Read more…
National & NZ News and Media

Gold Coast leads Australia in fetal alcohol spectrum disorder research – Dr Doug Shelton
Fetal Alcohol Syndrome was identified in the 1970s, and it refers to the various disorders that can occur when a pregnant woman drinks alcohol – such as low birth weight, distinctive facial features, heart defects, behavioural problems and intellectual disability.  On the Gold Coast we have Australia’s only diagnostic team in the area of FASD.  Dr Doug Shelton is the Director of Children’s Health at Gold Coast Health, and he spoke with Nicole Dyer.  Listen here… 


FARE calls out DrinkWise for blatant beer advertisement
The alcohol industry-funded and controlled body DrinkWise has been criticised for producing a blatant beer commercial thinly disguised as a public health message.  The Foundation for Alcohol Research and Education (FARE) claims DrinkWise has given up all pretence of being a health promotion organisation with its latest campaign which launches ahead of this weekend’s AFL Grand Final.  Read more…


Alcohol a no-no if pregnant
A midwife has said women should not drink even a drop of alcohol while pregnant, to avoid Foetal Alcohol Spectrum Disorder.  Danila Dilba midwife Elle Crighton said there was no safe level of alcohol consumption during pregnancy.  “If a mother drinks while pregnant, she puts her baby at risk of structural and morphology disorders and behavioural issues,” she said.  Read more…


Petition: Please put effective Fetal Alcohol Syndrome warning labels on all alcohol containers to warn women not to drink while pregnant and have a vigorous education campaign about it.
FASD is the largest cause of non-genetic, at-birth brain damage in Australia.  It is a completely preventable condition, but there is no cure. Anne Bergen has produced this Change.org petition to the Hon. Peter Dutton, Federal Minister for Health.  Sign the petition here. 


Experts to thrash out action plan for Foetal Alcohol Spectrum Disorder
Experts on Foetal Alcohol Spectrum Disorder (FASD) are gathering in Auckland this Friday [5th September] to discuss an action plan for research, policy, prevention and care for those affected by the condition.  The national symposium is being held at the University of Auckland’s Tamaki campus with keynote speaker being Jocelyn Cook, who heads Canada’s largest FASD research network.  Read more…


Indefinite jail terms for FASD sufferers inappropriate, WA Chief Justice Wayne Martin says
WA Chief Justice Wayne Martin has said it is not appropriate for people with foetal alcohol spectrum disorders to be indefinitely locked up under laws for the mentally impaired charged with crimes.  His comments came as Attorney-General Michael Mischin considered a request from disability advocates for a review of the case of an Aboriginal man held in prison for almost 11 years without conviction.  Read more…


North Brisbane is Australia's worst binge alcohol drinking area
More than 700,000 Australians are binge drinking on at least 11 drinks in a sitting on a weekly basis and it’s a growing middle class problem.  Today we reveal the grogged up hot spots of Australia based on the latest National Health Survey figures from the Australian Bureau of Statistics.  The information has been broken down by Medicare Local area and shows North Brisbane houses the nation’s highest number of irresponsible drinkers.  More than 40,000 adults consume 11 or more standard drinks in one sitting at least once a week in this region which takes in middle class inner Brisbane suburbs. Read more... 


The case of Rosie Anne Fulton
Despite spending $600,000 to keep her out of jail, indigenous woman Rosie Anne Fulton is again behind bars in Alice Springs.  What does this failure represent?  Rosie’s story is not uncommon.  Many in jail or at risk of prison have cognitive impairments, mostly due to Foetal Alcohol Spectrum Disorder.  Listen to the story here…

Resources

KnowFASD – Alcohol in Utero Knowledge Base
KnowFASD introduces the neurobehavioural difficulties that may appear throughout the lifespan of individuals with FASD. It is important to recognize that, being a spectrum disorder, FASD can look different for different individuals. Not all individuals with FASD will experience all of the issues presented here. However, this site summarizes the common neurobehavioural features of FASD found in current research. The problems presented on this site are not necessarily gender specific.

KnowFASD is an outreach project created by the "Intervention on FASD" Network Action Team (iNAT) of the Canada FASD Research Network
View the resource here…


Women Want to Know – Launch Videos Now Online
Last month FARE launched Women Want to Know, a campaign which aims to encourage health professionals to speak to women who are pregnant or planning pregnancy about alcohol and provide advice consistent with the Natioanl Health and Medical Research Council’s Australian Guidelines to Reduce Health Risks from Drinking Alcohol.  As part of their ongoing promotion of this important campaign, a number of videos from the official launch have been published online, including a panel session on overcoming challenges when discussing alcohol and pregnancy, and an address by the Australian Medical Association’s Dr Richard Kidd, who explains that octors are often on the front-line dealing with the effects of drinking.  View the resource here…


Planning and Implementing Screening and Brief Intervention for Risky Alcohol Use: A Step-by Step Guide for Primary Care Practices
Developed by the Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities.  SBI entails health professionals asking patients a few short questions to identify drinking patterns, followed by a brief conversation about these patterns and referral to treatment if needed.  This guide is an important tool to help primary care practices implement SBI to reduce the burden of health problems associated with excessive alcohol use.  View the resource here…


Implementing CHOICES in Clinical Settings That Serve American Indian and Alaska Native Women of Childbearing Age
Developed by the National Organization on Fetal Alcohol Syndrome (NOFAS) as part of a Cooperative Agreement between CDC and NOFAS.  CHOICES is a CDC-funded prevention program targeting non-pregnant women at risk of having an alcohol-exposed pregnancy.  This report outlines a three-phase implementation plan to place CHOICES in clinical practices serving American Indian and Alaska Native women of childbearing age.  View the resource here…

International News and Media

This Is Your Child’s Brain on Alcohol [USA/South Africa]
40,000 children are born each year with fetal alcohol spectrum disorders.  Social scientists have calculated that detrimental effects of alcohol cost the U.S. some $223.5 billion a year. But there’s a more disturbing cost that you might be surprised to learn about that’s not even factored into those staggering numbers: fetal alcohol spectrum disorders, the conditions that can result when a mother drinks during pregnancy. (When all of the disorders are present, in their most severe forms, we call it fetal alcohol syndrome.) According to the U.S. Centers for Disease Control and Prevention, almost all of these children will have mental health problems as adults and 82 percent will not live independently.  Read more…


School of Science researchers receive $200,000 grant to research fetal alcohol spectrum disorder [USA]
Researchers from the School of Science at Indiana University-Purdue University Indianapolis hope to increase awareness of the risks of drinking alcohol while pregnant.  Jim Marrs, associate professor of biology, has spent the past decade researching fetal alcohol spectrum disorders. His lab, which includes six undergraduate student researchers, conducts research to determine what stages of embryonic development are most sensitive to ethanol (alcohol) and which organs are most affected during these developmental windows.  Read more…


‘Drink Think’ alcohol warning for pregnant mothers [Northern Ireland]
A health pressure group in Londonderry has warned of the dangers of drinking during pregnancy.  ‘Drink Think’ claims there are mixed messages being given to expectant mothers from the various health authorities.  When an unborn baby is constantly exposed to alcohol they can develop foetal alcohol syndrome.  Read more…  

Can I Drink While Pregnant? Brain Imaging Expert Weighs In
During the month of August, two publications delved into the decades-old debate questioning exactly how drastically a mother’s activities while pregnant affect her child in the future—specifically in terms of alcohol consumption. We asked Elizabeth Sowell, PhD, director of the Developmental Cognitive Neuroimaging Laboratory at The Saban Research Institute of Children’s Hospital Los Angeles and Professor of Pediatrics at the USC Keck School of Medicine, to share her thoughts.  Read more...

Man with FASD teaches others about disorder [Canada]
Myles Himmelreich has lived with FASD his entire life, but didn’t know much about the disorder. Himmelreich is from Calgary and was brought in by the Prince Albert FASD Committee to speak about his personal experience on Wednesday at an FASD Awareness event.  Read more…


Yukon’s ‘pioneer’ FASD residence in working: staff [Canada]
The $3 million facility, Dun Kenji Ku or “People’s Place”, in downtown Whitehorse is an innovative concept intended to help a vulnerable population.  The long-term goal is to reduce interactions with police and emergency services.  Brian Philcox, chair of a group called FAS World, says he'd like to see a housing-first approach across Canada.  "Yukon has been a pioneer providing leadership on issues relating to FASD," he says. "In terms of housing and this particular project, it's really quite extraordinary and should be replicated in every province and every major community right across the country."  Read more…


Difficult diagnosis for disorder spectrum [Canada]
FASD comes with a stigma – and sometimes that can stand in the way of help.  But Laura Cocksedge wants people to know they can find help and they won’t be judged.  Cocksedge is a key worker for the Jean Pike Centre for Children and Youth’s program Understanding FASD Together.  She works directly with families that are affected by FASD and in the broader community to promote understanding of the spectrum disorder.  Read more…


How alcohol damages fetus and its adult life [Rwanda]
The testimony of Melissa, published on the web site of the US Centre for Disease Control, is one everyone woman intending to get pregnant, or those who already are, should mull over and over again. Actually, not just expectant women and those planning to have babies, the lot of us. You, me and everyone. Read more…


Editorial:  UNM leads fight against fetal alcohol syndrome [USA]
It’s an easily preventable disorder that affects at least 2 percent of children born in the U.S., leaving them with memory, attention, language and thinking skills and behavioural problems, as well as altered physical and facial features.  And the University of New Mexico is at the forefront of determining how best to diagnose it early and treat it successfully.  Read more…


Local Mother Spreads Awareness For FASD [USA]
When Laura Gjerding adopted a daughter 16 years ago, she didn’t anticipate the different life Madison Gjerding would have. “I went into [the adoption] with a positive outlook,” said Gjerding, who was informed during the adoption process in Utah (before moving to Newnan in 2008) that Madison had effects of fetal alcohol syndrome. “She was about three pounds when she came home. But time kept going on and she stayed at three pounds. You don’t know what to look for when you have a baby and we thought she didn’t like bottles. As time went on, there were major delays in her mental health.”  Read more…


Mini pow-wow raises Fetal Alcohol Spectrum disorder awareness [Canada]
Patience is the key to parenting children with fetal alcohol spectrum disorder, according to a grandmother from Long Lake #58.  “We are very kind and loving and caring with them, but it can also become very challenging for us as adults with our children, particularly with the short-term memory.”  Read more…


LCBO ad urging pregnant women to avoid alcohol sparks complaint [Canada]
A liquor retailer’s campaign to discourage pregnant women from consuming alcohol has been described by one Toronto woman as “offensive and wrong on so many levels.”  Laura Jamer saw an ad by the Liquor Control Board of Ontario (LCBO) that shows a naked pregnant women holding a sign with the word “love” in red and the message “Love your body, love your baby.  Don’t drink while pregnant” below the image.  Read more… 
More on this topic:  Drinking during pregnancy: New ads should make us squirm 


Foley family copes with effects of fetal alcohol spectrum disorder [USA]
Despite battling fetal alcohol spectrum disorder, Crystal scored average to above average on her social recognition skills at her last mental evaluation.  She also walked with her graduating Foley High School class last spring, earning a graduation party in her backyard.  The Chmielewskis have conquered the peak of Crystal's struggles that included a nine-week hospital stay, holes in their walls and many frustrated attempts to calm her during violent outbursts.  Read more…


Fetal Alcohol Spectrum Disorders ‘Health Crisis’ Hot Topic at World-Renowned Conference [Canada]
The world’s leading teratology experts at MotherToBaby USA and Motherisk Canada, members of the international non-profit Organization of Teratology information Specialists (OTIS), will converge with the European Network of Teratology Information Services (ENTIS) in Toronto on September 19th – 21st to share breakthrough research and discuss how to prevent alcohol consumption during pregnancy.  Read more…


Volunteers stitch together picture of FASD [Canada]
As of last week, a new quilt hangs in the Northwest Territories Legislature, depicting personal stories about the impact of fetal alcohol spectrum disorder (FASD) on communities across the territory.  The community artwork project was presented to the territorial minister of Health and Social Services, Glen Abernethy, by the NWT FASD Committee on Sept. 9, International FASD Day.  Read more… 


Giving birth and boozing?  The risks of drinking during pregnancy [UK]
Deciding whether to drink alcohol during pregnancy is a confusing business. Anecdotally, viewpoints on the matter range from testimonies of “I drank through the whole of my pregnancy and my child turned out fine” to reports of bartenders refusing to serve alcohol to pregnant women. Recommended guidelines from health professionals are highly variable, with some doctors recommending complete abstinence and others suggesting that occasional light drinking is unlikely to cause harm to the baby.  Read more…


Breaking the cycle of Fetal Alcohol Spectrum Disorder [Canada]
45-year-old “Betty” lives in Ontario’s Kenora district, northwest of Thunder Bay. She’s a foster mom who’s raised seven children ranging in age from seven to 24, six of whom have been diagnosed with Fetal Alcohol Spectrum Disorder (FASD). As part of her work, she also teaches others about FASD. For decades, she’s known the challenges that come with the disorder.  In fact, her experiences with FASD started before she was born.  Read more…


Guilt, shame and redemption: coping with Fetal Alcohol Spectrum Disorder [Canada]
Annette Cutknife gave birth to her son Daniel on October 31, 1988. Right away, she knew her son was different. “The moment he was born he did not make a sound. He didn’t even cry, he didn’t make a noise.”  Cutknife had been consuming alcohol consistently through her pregnancy. “There were no posters, there was no information really on the topic. And the myth that I had heard time and time again was that it was okay to drink after three months into pregnancy.”  Read more…


Generational legacy: the devastation of Fetal Alcohol Spectrum Disorder [Canada]
Gladys Thompson is 57 years old, a grandmother raising her eight-year-old granddaughter, M. They live in Garden River First Nation, which is about a 20-minute drive from Sault Ste. Marie, Ontario.  When she begins talking about herself, she’s unsure of how old she is. Her clinician, who is sitting in on the interview, reminds her.  “I always knew there was something wrong with me but I always hid behind men. I just couldn’t put my hand on it. I tried to go back to school for college. I couldn’t concentrate and I knew there was something wrong,” says Thompson.  Read more…


Resources for FASD available [USA]
Unlike many diseases and disorders, FASD is entirely preventable, and various local resources are available to help families and children affected.  But despite September being a special month in B.C. devoted to FASD prevention and awareness, surprisingly few people know what the diseases are or how to relate to children who have it.  Read more…


Ayotte Honors New Hampshire Angel in Adoption [USA]
At a special ceremony on Capitol Hill today, U.S. Senator Kelly Ayotte (R-NH) honored Joyce Jorgenson of Harrisville as a 2014 Angel in Adoption.  Ayotte nominated Joyce for the award in recognition of her efforts to raise awareness and increase public understanding of Fetal Alcohol Spectrum Disorder (FASD).  Joyce joined fellow honorees from across the country in Washington, D.C. , this week for events in celebration of her extraordinary work.  Read more…


Murkowski Honored for Fight Against Fetal Alcohol Spectrum [USA]
Senator Lisa Murkowski today [Sept 17] was honored by NOFAS for her leadership on the issue [of FASD] at the Smart Moms, Healthy Babies International Commemoration event – hosted by NOFAS to raise national and international awareness about recommendations and resources for a healthy pregnancy. Read more…


Nunavut FASD posters provoke strong reaction [Canada]
The Nunavut government’s dramatic new campaign to prevent fetal alcohol spectrum disorder is provoking a strong reaction from residents.  Suzie Muckpah says the unborn child should come first when it comes to healthy pregnancy.  Read more…


Our Good Deeds:  Woman offers hope, advice to FASD families [USA]
Nora Boesem’s work in helping families who have a child with FASD has earned her a lot of thanks over the years.  Still, she was surprised by the $1,000 she was recently given by Jolly Time Pop Corn for providing a helping hand.  The Newell woman was one of 100 people around the country given the Kernels of Kindness award for her work in the local community.  Read more…


New FASD program builds bridges between children and police [Canada]
A new recreation program in Waterloo Region is changing the way police officers look at boys with fetal alcohol spectrum disorder, a developmental disability caused by prenatal exposure to alcohol.  Boys Unplugged was launched on Saturday at the Children’s Safety Village in Cambridge.  For the first event, organizers paired ten youth with members of the Waterloo Regional Police and had them build race cars out of cardboard.  Read more…


Harrisville mother honored for her work to raise awareness about fetal alcohol syndrome [USA]
An angel is suspended on a ribbon of lace in Joyce A. Jorgenson’s home in Harrisville.  It gives her comfort as she remembers her son, Patrick, who died from liver cancer March 16 2013, the day before his 40th birthday.  Jorgenson adopted Patrick when he was a newborn.  At birth, he weighed just 4 pounds.  At the time, he suffered from a number of respiratory issues, which doctors thought might be symptomatic of cystic fibrosis, a life-threatening genetic disease that primarily affects the lungs and digestive system.  That early theory turned out to be incorrect. Read more…


Ontario FASD Evidence Services Can’t Accommodate A Demand [Canada]
Medical experts contend a miss of evidence services in Ontario is preventing people with fetal ethanol spectrum commotion from reaching their full potential.  There are usually 9 locations in a range where a chairman can accept a FASD diagnosis for free.  Guelph proprietor Helen Hoy says there were even fewer evidence clinics 20 years ago, that is when she began to think that her adopted daughter – her youngest – had FASD.  Read more…

Latest Research
Overweight and Obesity Among Children and Adolescents with Fetal Alcohol Spectrum Disorders
A.J. Fuglestad, C.J. Boys, P-N Chang, B.S. Miller, J.K. Eckerle, L. Deling, B.A. Fink, H.L. Hoecker, M.K. Hickey, J.M. Jimenez-Vega and J.R. Wozniak, Alcoholism: Clinical & Experimental Research, 26 August 2014, doi: 10.1111/acer.12516
Because prenatal alcohol exposure is associated with growth deficiency, little attention has been paid to the potential for overweight and obesity in children with FASD.  This study examined the prevalence of overweight/obesity (BMI) in a large clinical sample of children with FASD.  Data suggest that clinicians may consider prenatal alcohol exposure as a risk factor for metabolic/endocrine disruption, should evaluate diet as a risk in this population, and may need to target interventions to females prior to puberty to effect changes in overweight-related outcomes.  Read more…


Prenatal exposure to binge pattern of alcohol consumption: mental health and learning outcomes at age 11
K. Sayal, J. Heron, E. Draper, R. Alati, S.J. Lewis, R. Fraser, M. Barrow, J. Golding, A. Emond, G. Davey Smith and R. Gray, European Child & Adolescent Psychiatry, 11 September 2014, doi: 10.1007/s00787-014-0599-7
The objective of the study is to investigate whether episodic binge pattern of alcohol consumption during pregnancy is independently associated with child mental health and academic outcomes.  After disentangling binge-pattern and daily drinking, binge-pattern drinking was independently associated with teacher-rated hyperactivity/inattention and lower academic scores in both genders. Episodic binge pattern of drinking appears to be a risk factor for these outcomes, especially hyperactivity and inattention problems, in the absence of daily drinking.  Read more…


Visual deficits in a mouse model of Fetal alcohol spectrum disorders 
C.L. Lantz, N.S. Pulimood, W.S. Rodrigues-Junior, C-K.J. Chen, V.A. Kalatsky, A.C. Manhaes and A.E. Medina, Frontiers in Pediatrics, 17 September 2014, doi: 10.3389/fped.2014.00107
Alcohol consumption during pregnancy can lead to a multitude of neurological problems in offspring, varying from subtle behavioural changes to severe mental retardation.  Early alcohol exposure can strongly affect the visual system and children with FASD can exhibit an amblyopia-like pattern of visual acuity deficits even in the absence of optical and oculormotor disruption.  This study tests whether early alcohol exposure can lead to a disruption in visual acuity, using a model of FASD t mimic alcohol consumption in the last months of human gestation.  It was observed that animals exposed to ethanol displayed spatial frequency acuity curves similar to controls.  However, ethanol-treated animals sowed a significant deficit in contrast sensitivity.  The findings suggest that binge alcohol drinking restricted to the last months of gestation in humans can lead to marked deficits in visual function.  Read more…
 

A DTI-based tractography study of effects on brain structure associated with prenatal alcohol exposure in newborns
P.A. Taylor, S.W. Jacobson, A. van der Kouwe, C.D. Molteno, G. Chen, P. Wintermark, A. Alhamud, J.L. Jacobson and E.M. Meintjes, Human Brain Mapping, 3 September 2014, doi: 10.1002/hbm.22620
Prenatal alcohol exposure is known to have severe, long-term consequences for brain and behavioural development already detectable in infancy and childhood.  Diffusion tensor imaging (DTI) and tractography were used to analyse white matter (WM) development in 11 newborns (age since conception <45 weeks) whose mothers were recruited during pregnancy.  Comparisons were made with nine age-matched controls born to abstainers or light drinkers from the same Cape Coloured community near Cape Town, South Africa.  In each of the WM networks, the axial diffusivity was the parameter that showed the strongest association with maternal drinking.  The strongest relations were observed in medical and inferior WM, regions in which the myelination process typically begins.  Read more…


Neural crest development in fetal alcohol syndrome
S.M. Smith, A. Garic, G.R. Flentke and M.E. Berres, Birth Defects Research Part C: Embryo Today: Reviews, 15 September 2014, doi: 10.1002/bdrc.21078
FASD is a leading cause of neurodevelopmental disability.  An understanding of the mechanisms underlying the distinctive craniofacial deficits that accompany FASD would inform their diagnostic utility.  Our understanding of these mechanisms is challenged because ethanol lacks a single receptor when redirecting cellular activity.  This review summarizes our current understanding of how ethanol alters neural crest development.  Because facial and brain development are mechanistically and functionally linked, research into ethanol’s effect on neural crest also informs out understanding of ethanol’s CNS pathologies.  Read more…

 
Connecting teratogen-induced congenital heart defects to neural crest cells and their effect on cardiac function
G.H. Karunamuni, P. Ma, S. Gu, A.M. Rollins, M.W. Jenkins and M. Watanabe, Birth effects Research Part C: Embryo Today: Reviews, 15 September 2014, doi: 10.1002/brc.21082
Neural crest cells play many key roles in embryonic development, as demonstrated by the abnormalities that result from their specific absence or dysfunction.  Unfortunately, these key vells are particularly sensitive to abnormalities in various intrinsic and extrinsic factors, such as genetic deletions or ethanol-exposure that lead to morbidity and mortality for organisms.  This review discusses the role identified for a segment of neural crest in regulating the morphogenesis of the heart and associated great vessels. Expanding our understanding of early functional consequences could be useful in improving diagnosis and testing therapies. Read more…


What does the general public in the UK know about the risk to a developing foetus if exposed to alcohol in pregnancy?  Findings from a UK mixed methodology study
R. Mukherjee, E. Wray, S. Hollins and L. Curfs, Child: Care, Health and Development, 23 September 2014, doi: 10.1111/cch.12187
This study aimed to assess the current level of knowledge about FASD in the UK general population.  A mixed methodology study was conducted using a 17-item questionnaire and focus group sessions.  Four focus groups were held with an average of 10 people in each group.  Semi-structured questions and thematic analysis of interviews alongside quantitative analysis of the questionnaire data was completed.  Results show that there is currently a superficial level of knowledge about FASD in the UK general public.  More detailed work in subgroups, such as young women, to identify their specific needs may be necessary before targeted public health and educational interventions can be developed to meet the needs of the general public.   Read more… 
Upcoming Events
ATCA 2014 Conference – Coogee, NSW
DATE: 13-16th October
DETAILS: This year’s conference will bring together professionals working in therapeutic communities, researchers and clinicians in the Alcohol and other Drug (AOD) field and affiliated areas. Therapeutic Communities (TCs) are an integral part of the alcohol and other drug services landscape, nationally and internationally, with ATCA members managing over 60 TCs in Australia and New Zealand, as well as a host of other community and prison-based services.  The conference program commences on Tuesday 14 October and will conclude on Thursday at 12.30pm. Depending on submitted abstracts, a half day workshop program will be offered on Thursday afternoon - the additional training session planned for Friday 17 October has now been incorporated into the main conference agenda - providing delegates with a free day on the Friday.  For more information click here.


Third European Conference on FASD – Rome, Italy
DATE: 20-22nd October
DETAILS: Building on the success of the first and second conferences, EUFASD is pleased to announce the third European conference on FASD, to be held in Rome. The aim of these conferences is to bring together European researchers, public health workers and FASD-related NGOs to share knowledge and promote collaborations. Presentation will cover latest development worldwide, with an emphasis on European experience.  For further information and registration, click here.  


FASD: A Focus on Congenital Heart Defects – St. Petersburg, Florida, USA
DATE: 4th November
DETAILS: The purpose is to provide current information on effects of alcohol on the developing cardiovascular system in addition to neural effects and the societal impact.  Current research and studies will be addressed.  For more information, click here.  


“All Aboard” for the 49th ASID Conference – Fremantle, WA
DATE: 5th November
DETAILS: “All Aboard” recognises that the NDIS is a reality and at last Australians with a disability can expect a fair go and adequate support to realise their dream.  With 400 or more like-minded delegates from around the world, you will hear keynote speakers, latest research and current innovations and learn about contemporary practice and personal journeys.  For more information, click here.  


Living Well: FASD and Mental Health Conference – Winnipeg, Manitoba, Canada
DATE: 5-7th November
DETAILS: This conference will delve into the interconnection between Mental Health and Fetal Alcohol Spectrum Disorder, spanning the areas of prevention, intervention, support, evaluation and research.  This event is a Canada Northwest FASD Partnership Conference, hosted by Healthy Child Manitoba.  For more information, click here. 


2014 APSAD Conference – Adelaide, SA
DATE: 9-12th November
DETAILS: This year’s conference theme, "The times they are a changin’ " was chosen by the Scientific Program Committee to reflect the changing times and increased pressures faced by the drug and alcohol sector. Clinical and non-clinical research is also dramatically increasing our understanding of dependence, prevention and treatment.  The conference, to be held at the Adelaide Convention Centre from Sunday 9 – Wednesday 12 November 2014, will feature an exciting program of international and national speakers, focusing on new treatments, prevention and policy in the areas of drug and alcohol research. With original and innovative work from the field, the program will encourage alternative presentation styles.  For more information, click here. 


SAVE THE DATE - 7th International Conference on Birth Defects and Disabilities in the Developing World (ICBD) – Dar-es-Salaam, Tanzania
DATE: 21-24th September 2015
DETAILS: Recognising the need to build capacity in lower-income countries for the prevention of birth defects and preterm birth and care of those affected, the goal of these biennial conferences has been to provide specific practical tools and approaches that developing country participants can use to implement and strengthen surveillance and health care delivery and influence policy and funding in support when they return to their respective countries.  Health care providers, policy makers, researchers, donors, parent-patient organisations, other NGOs and youth volunteers from across the world interested in strengthening reproductive, maternal, newborn and child health, with a focus on the prevention of birth defects, preterm birth and associated disabilities are invited to attend.
A conference website with information on sponsorship, program, abstract submission and registration will be live early next year.  In the meantime, general queries can be emailed to globalprograms@marchofdimes.com 
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