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March 2012 Newsletter from Russell Family Fetal Alcohol Disorders Association
Good morning
Well the good news is that we have reached and exceeded the 1000 supporters mark. In fact we have 1024. This is amazing and is a credit to those people who are coming forward because they realise how FASD and alcohol and pregnancy impact on the jobs they do.
Other news is that our colleagues in New Zealand will host their first ever conference on FASD at the end of the month in Wellington. For those of you with time and a shot of disposable income, this will be an excellent Conference. I know the people involved in organising this and this conference will be excellent.
Please don’t forget the following:
- If you have any FASD projects that you want added to our list – please let me know
- If you would like quality training on FASD contact me on 0412 550 540 or elizabeth [at] rffada [dot] org
- If you are a parent or carer we would like to hear from you because I am specifically looking at what parents and carers need in the way of information and support outside of the health system
Thank you for your support
Kind Regards
Anne Russell
First ever New Zealand conference on alcohol damage to children
New Zealand will host its first ever conference on FASD on March 22nd in Wellington. Article, Voxy.co.nz, March 7, 2012a
Charge Reckless Mum: Doctor’s Union — The West Australian
Alcohol While Pregnant is Worse Than Cocaine or Pot
Pregnancy exposure to alcohol associated with lower academic scores
Fetal Cocaine Exposure May Not Affect Kids’ Academics: Study
A recent study has found that fetal exposure to cocaine, tobacco or marijuana does not affect the academic ability of children.
Article, U.S. News, March 7, 2012
Register now for NTI Upstream Webinar, Controversies in Diagnosis of Fetal Alcohol Spectrum Disorders: Implications for DSM-V
Join leading FASD expert, Dr. Ira Chasnoff on March 21st for the webinar, Controversies in Diagnosis of Fetal Alcohol Spectrum Disorders: Implications for DSM-V. Webinar, NTI Upstream, March 2012
Interview with Edward Riley, Ph.D. – FASD Expert
NOFAS President, Tom Donaldson and Vice President, Kathy Mitchell sit down with Dr. Edward Riley to discuss the latest FASD research in brain imaging techniques, animal models, and behavioral studies. Dr. Riley is the Director of the Center for Behavioral Teratology at San Diego State University.
European Public Health Alliance
working towards better health for all
Welcome to the March 2012 Newsletter
Pregnant Kiwis’ drug, alcohol use causes concern
According to a new study, New Zealand mothers-to-be drink alcohol at a rate four times higher than women in the United States.
Article, 3 News-New Zealand, February 23, 2012
Body stayed silent on pregnancy warnings
Australia’s food standards group refused to release two reports on alcohol and pregnancy, including reports that stated people that see warning labels on alcoholic beverages are more likely to talk about the risks of alcohol use during pregnancy and a report that states warning labels on alcoholic beverage containers could potentially prevent up to 77 cases of FASD per year in Australia.
Article, The Australian, February 22, 2012
New calls on booze and babies
FASD Birth Mother, Elizabeth Russell of Australia talks about her experience with her two FASD affected sons and how she was advised by her physician to “have a few drinks” during her pregnancy.
Article, The Australian, February 25, 2012
If you have trouble with Centrelink please seek assistance from your local Welfare Rights agency, who specialise in providing advice and representation to people regarding Social Security Law.
www.welfarerights.org.au
The Parenting Matters! project is a research study funded by the Canadian Institutes of Health Research (CIHR). The study seeks to develop a better understanding about what it means to parent a child with a neurodevelopmental disorder (examples of a neurodevelopmental disorders are: Spina Bifida, Cerebral Palsy, Epilepsy, Fetal Alcohol Spectrum Disorders, Autism Spectrum Disorder, Down syndrome, cognitive disabilities and global developmental delay) and the day to day experiences of these families.
You can watch this webinar NOW on your computer. It was originally aired on Feb. 28, 2012
- by extensive literature syntheses;
- by a review of legal and policy frameworks that affect families of disabled children;
- by analyzing population health data to explore parenting issues at a community level; and
- through a mixed-methods study with families in four Canadian cities.
In the latter, we expect to engage 60 families in each city to complete a package of questionnaires developed with our National Research Advisory Group, and then to invite 10 mothers and fathers from each city to participate in face-to-face qualitative interviews to explore their experience of being a parent to a child or youth with a neurodevelopmental disorder (e.g., autism, global developmental delay, etc.).
Part 1 — Parenting Children with Neurodevelopmental Disabilities: What Do We Know, and What are the Opportunities? originally aired on February 28th, 2012 at 11:00 – 12:30 ET.
The main purpose of this webinar is to share what we have learned to date about parent health and well-being, and about parenting as reported in the NLSCY database. We will report on the progress of the study, and speculate about the potential utility of the findings for prevention and intervention studies to help parents on their parenting journey with children with neurodevelopmental disorders. We will also seek people’s advice about KT opportunities once the studies are done.
Mental Health Roadmap Submission
Australia’s “Draft Ten Year Roadmap for Mental Health Reform”
On the 16th January 2012 the Department of Health released the draft document which will be used by the federal and state governments to map the reform of Australia’s mental health system for the next 10 years.
The Russell Family Fetal Alcohol Disorders Association (rffada) represents over 700 individuals and organisations from around Australia. Many of the people and organisations on our database understand the deep-rooted relationship between Fetal Alcohol Spectrum Disorder (FASD) and mental health.
Statistics extrapolated from Canada and the United States (because we have none of our own to date), finds that there could be more than 200,000 affected individuals in Australia. Of those 200,000 people, 98% will have mental health problems (sources for this information available on request).
The rffada suggests that without incorporating information relating to the following dot points, the needs of a significant proportion of the Australian mental health community and their families will not be met.
- The importance of the nine months prior to birth in relation to the overall physical and mental health of the individual
- Ninety eight percent of people prenatally affected by alcohol will have a mental health condition
- Over 451,000 children were identified by the ANCD as living in families where drug and alcohol consumption is problematic
- That the current dual-diagnosis model (drugs and/or alcohol and mental health) become a tri-diagnosis model incorporating FASD as the third diagnosis
- The understanding that FASD is an organic brain injury often overlooked as the primary disability under which a variety of ensuing conditions occur, one of which is mental health
- Information provided by parents and carers must be taken into consideration as part of the assessment process e.g. that the individual has no insight into his or her needs; that the individual requires certain support etc.)
- The expectation that people can make an educated and informed decision because they say they can
- While people with FASD can relate the name of their disability and even the co-occurring conditions, they are unlikely to be able to accurately describe the services, supports and programs which can best support them and progress them to the next level
- While people over 18 are considered to be adults, adults with FASD may be operating at the developmental age of a 12 year old
Unless Fetal Alcohol Spectrum Disorder is named as one of the leading causes of mental health conditions in Australia, those families currently living with FASD will not receive the support they need.
While the parents and carers of children with Autism receive acknowledgement, understanding and compassion: acknowledgement that their job is a hard one; understanding that parenting a child with Autism takes a huge emotional toll and compassion for the grief and loss experienced; parents and carers of children with FASD receive the contrary.
They experience a lack of acknowledgement that they are dealing with a child with a disability – the reason is twofold: Firstly because the child looks ‘normal’ and talks well; and secondly because only 2% of medical professionals feel comfortable dealing with FASD.
They experience a lack of understanding of how difficult it is to parent a child with FASD since they are seen as ‘bad’ parents since the child’s behaviour is seen as a parenting problem not a brain injury — and instead of compassion, they experience guilt, shame and fear.
Russell Family Fetal Alcohol Disorders Association
30th January 2012
Late January Newsletter
Good morning – I trust everyone is well – there has been a lot happening in the world of FASD over the last few weeks. Especially interesting is that the House Standing Committee Inquiry will be in Cairns on the 31st January – details below.
I thought I would share with you my favourite quote:
To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and to endure the betrayal of false friends; to appreciate beauty; to find the best in others; to leave the world a bit better whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded.
— Ralph Waldo Emerson
FASD Events
There will be a community consultation by the House Standing Committee on Social Policy and Legal Affairs in Cairns on the 31st January at the Sebel – 8.30am
FASD on Facebook
Join our Facebook page for strategies interventions and support here.
FASD on YouTube
Have a look at the rffada’s channel on YouTube for information on strategies, being a birth parent, strategies for teachers etc rffada@YouTube
FASD on the Internet
rffada website is at http://rffada.org
FASD News
1–2 Drinks a Week Can Raise Miscarriage Risk
According to a new study from Denmark, light drinking in early pregnancy increases the risk of miscarriage. Article, My Healthy News Daily, January 18, 2012
Homes declared alcohol-free in Kimberley study
ABC Online. It comes as researchers complete a world-first study into foetal alcohol syndrome in the Kimberley. The study was initiated by Aboriginal women in the …
New Links Found Between Drinking During Pregnancy And Fetal Alcohol Syndrome
KPBS SAN DIEGO — UC San Diego researchers have discovered new links between drinking during pregnancy and fetal alcohol syndrome. Their new study identifies a particularly sensitive time of a woman’s pregnancy. The research involved 992 women…
Fetal Alcohol Syndrome risk higher at end of 1st trimester
abc7.com (KABC Photo) LOS ANGELES (KABC) — The risk of a fetus developing fetal alcohol syndrome is the greatest toward the end of a woman’s first trimester of pregnancy, according to a study released Wednesday by University of California, San Diego…
Alcohol not safe at any time during pregnancy
Gant Daily
To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and to endure the betrayal of false friends; to appreciate beauty; to find the best in others; to leave the world a bit better whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded. Ralph Waldo Emerson
San Diego, CA, United States (AHN) – A study on Fetal Alcohol Syndrome has found there is no safe amount of drinking during pregnancy. The study appeared online Jan. 16, ahead of publication in the April print issue of the journal Alcoholism Clinical …
New Study: It’s Still Not Okay To Drink Alcohol While Pregnant
“[O]ne of the challenges has been determining what are the windows of risk and the patterns in timing and quantity of alcohol use, and this [study] addresses that,” Tom Donaldson, president of the National Organization on Fetal Alcohol Syndrome in…
Youth bail service proving successful: Burch
The after-hours bail support service aims to keep young people out of custody. (ABC TV)
The ACT Government is claiming success with a new program aimed at keeping young people out of custody.
Alcohol-Related Birth Defects and the Law:
How Should Attorneys & Judges Respond to Fetal Alcohol Spectrum Disorders (FASD)? A free Continuing Legal Education Program, will be held on Friday, February 3rd at the 2012 American Bar Association’s Midyear Meeting in New Orleans, Louisiana. For more information and to register visit the link above.
Banff XLIV: Fetal Alcohol Spectrum Disorders: Challenges in Practice, Research and Policy
The Fetal Alcohol Spectrum Disorders: Challenges in Practice, Research and Policy conference will be held on March 18-21, 2012 in Banff, Alberta Canada to discuss many of the issues surrounding alcohol-use during pregnancy. Conference Announcement, University of British Columbia, January 2012
Online FASD Courses
The CDC’s Arctic FASD Regional Training Center is now offering a series of three intensive one-credit courses online through the Department of Psychology at the University of Alaska Anchorage. Course, Arctic FASD RTC, January 2012
Study: No alcohol intake safe during pregnancy
A new study suggests that the alcohol risk to a fetus is highest in the late first trimester. Article, USAToday, January 16, 2012
SDSU researchers develop an assessment tool to identify birth defects
Leading FASD expert, Dr. Eugene Hoyme and South Dakota State University have collaborated to develop a standardized assessment tool to identify birth defects in infants. Article, Medical Express, January 16, 2012
Drink Think projects targets the city’s new mums and dads
The Drink Think project of Ireland provides education to expecting and new parents about the dangers of alcohol-use during pregnancy.
Thanks for your support 
Anne
Poll Results—should FASD be recognised as a disability
The previous poll on our home page asked:
Should FASD be recognised as a disability by the Department of Families, Housing, Community Services and Indigenous Affairs? (Currently it is not)
98% of the votes said “Yes”, that FASD should be recognised.
January Newsletter
Below is the rffada’s first newsletter for the year. It is a very short one. I would like to draw your attention to the event in Cairns associated with the House Standing Committee Inquiry. As they move around Australia I will provide an itinerary for those who wish to attend.
Rffada News
Don’t forget we have a free call number for advice on FASD 1800 rffada
FASD News
“Study finds Early Start program could save US billions in health costs.” December 20th, 2011
It’s a Matter of Justice – 5th National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder
Fitzroy children centre of Foetal Alcohol Disorder study
Pediatrician James Fitzpatrick of Australia is leading an investigation in to FASD in children of the Fitzroy Valley.
Article, Science Network of Western Australia, December 16, 2011
Analysis of fetal meconium can reveal gestational alcohol exposure
A recent study of fatty acid ethyl esters (FAEEs) and ethylglucuronide (EtG) in meconium at hospitals in seven Italian cities has revealed that fetal alcohol exposure is underestimated in Italy.
Article, EurekAlert, December 15, 2011
Pregnancy and alcohol don’t mix
Due to the recent push for alcohol and pregnancy warning labels on alcoholic beverages, physicians in Australia are recommending that women abstain completely from alcohol use during pregnancy.
Article, Central Western Daily, December 14, 2011
FASD Events
Inquiry by the House Standing Committee on FASD
The Inquiry’s first port of call on their trip around Australia is Cairns on the 31st January.
They will be based at the Sebel Townhouse and will commence at 9am. Please attend if you can. Those parents and carers who do not wish to speak in front of others have been given confidential time to discuss their issues. Please attend. This is such a crucial Inquiry for FASD on Australia. Thanks. If you need more information please email me. Anne.
The 5th International Conference on Fetal Alcohol Spectrum Disorder
Research: Results and Relevance Integrating Research, Policy, and Promising Practice Around the World
Conference Dates: February 27 – March 2, 2013
Conference Location: The Westin Bayshore, Vancouver, BC
Call for Abstracts is now open Deadline For Abstract Submissions: May 31, 2012
The National Drug and Alcohol Research Centre is currently seeking families
including foster and adoptive families who care for children affected or suspected of being affected by FASD, to take part in an extremely important research project. If you are such a family (or you are a service provider working with such a family) would you please seriously consider being involved as the information you provide will be used to assess what services are needed to assist families caring for children with FASD. The survey can be conducted over the phone at a time convenient to you and all information given in the survey will be confidential. All participants will go into a draw to win an iPad.
If you are interested in participating please call Courtney on 02 9385 0282 or email Courtney [dot] breen [at] unsw [dot] edu [dot] au.
2012 Upcoming Festivals – Mamapalooza Spring Festivals
May 7–13, 2012, Sydney Australia @ Tap Gallery
Mothers of the world take note — Sydney will be on the map in 2012 with a great Festival of Arts celebrating Mamapalooza ‘the Aussie way!’
veemalnar [at] gmail [dot]com
mobile: 0402 036 082
2007 FASD Media Campaign
Download PDF of 2007 media coverage on FASD
This document (2MB PDF) contains a package of some of the news items from the 2007 campaign for Fetal Alcohol Spectrum Disorder and alcohol and pregnancy which was a national media campaign run jointly with the rffada.
Commonwealth Bank Support
Thanks to the Commonwealth Bank for their helpful, courteous and compassionate support for the rffada over the last 12 months as part of the Local Heroes Campaign and the Australian of the Year Awards. We encourage people all over Australia to nominate someone in their local or wider community for one of the awards in the Australian of the Year Awards Program. We were blessed to have Anne achieve Queensland finalist stage thanks to the wonderful people from Pregnancy Help who nominated Anne for this award. If there is one thing we have found doing this work is that there are more Australians than most of us know who are dedicating their time and sometimes even their lives to supporting others quietly, inconspicuously and successfully. We wish you all the best.
Merry Christmas and a Happy 2012
From the board
Sonia Berton — President
Anne Russell — Secretary
Gary Johnson — Treasurer
Christmas Newsletter
I am sure you have all received Christmas greetings up to the eyeballs but I feel that I need to thank you all for being part of the rffada. We currently have on our database an amazing number of people and organisations (622 in fact). We thank you for your support.
The rffada will continue to do its best for FASD in Australia in the New Year. We have certainly begun to tip the balance in Australia with the House Standing Committee on Social Policy and Indigenous Affairs preparing an inquiry on FASD and the labelling issue move slowly forward.
In the minds of those of us who follow the progress of this condition in Australia we are pleased that it is receiving the level of attention and support that it has over the last 6–9 months.
Thanks to all of you who support the rffada. As a birth mother of two children with the condition I will not stop until Australia has the following:
- A national media awareness campaign for the prevention of FASD
- Alcohol and pregnancy education in all high schools
- Training implemented for the employees of all services likely to be visited by a person with FASD
- Early intervention funding similar in nature to the Better Start Initiative
- Ongoing government funding for the rffada to begin some of the projects we have outlined in our strategic plan (not quite ready for comment)
It’s a big job but knowing that we have the support of so many does make a big difference.
Thanks
Merry Christmas and Happy New Year
Rffada December Newsletter
This will be the last bulletin for the year and all of us at the rffada wish you a happy, healthy, safe Christmas. Please remember if you are pregnant no amount of alcohol is safe for your baby.
We appreciate your support and that you bring this information to other people. By doing this I believe we are reducing the number of children born with FASD – slowly but surely.
Do you remember the story about the starfish? However many you throw back won’t matter as there are too many washed up starfish to save? As she throws one starfish back into the sea the little girl says…“It will matter to this one”! That’s how I see what we are doing. There are so many people and so much to do but if you help us and bring the message to just one other person, then even if we cant save the world, it will matter to the one we can save.
Merry Christmas and Happy New Year!
RFFADA
Rffada channel on YouTube
Rffada Facebook — the rffada on FB is gradually becoming a forum where people can ask questions about FASD and obtain a variety of answers. This is what I had hoped would happen with this FB site because there are around 200,000 people with FASD in Australia so there are many mothers, fathers, carers, aunties, grandmothers and services trying to figure out how to help these people. The more people who can link to the rffada site on FB, the more solutions there might be for a question from a distressed mother.
Thanks to all those people who are friends of the rffada
FASD Presentations
See Anne’s new presentations on YouTube under rffada. They are comprised of 11 succinct presentations on various aspects of FASD and the information specific to that aspect. There is a great amount of information about FASD on the Internet but sometimes its hard to sift through it all when you just need something specific. These presentations make it easier for service providers and parents and carers to find the information they need. Feedback is most welcome.
FASD Training
The first publicly available FASD training in Australia is being delivered around Australia. For further information contact anne [at] trainingca [dot] com [dot] au
FASD News
- Labels to warn of booze risk to babies
- Injury and illness from grog costs us millions
- Bucket booze drinks banned in NSW
- Film about Preventable Birth Defects Subject of Christmas Release
- Fetal harm warnings likely for alcohol labels
- The sobering facts on fetal alcohol
- Pregnancy health dilemmas solved by our GP
Calendar of Events
Christmas!
Kind Regards
Anne Russell
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