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Welcome to rffada

The Russell Family Fetal Alcohol Disorders Association (rffada) is a national not-for-profit health promotion charity dedicated to prevention and ensuring that individuals affected prenatally by alcohol have access to diagnostic services, support and multidisciplinary management planning in Australia and that carers and parents are supported with a “no blame no shame” ethos.

On this site you will find a range of support resources and information relating to Fetal Alcohol Syndrome Disorder, or FASD.

The Russell Family Fetal Alcohol Disorders Association (rffada) Strategic Plan is based on four key priorities.

    1. Prevention
    2. Support
    3. Training and Education
    4. Research and Projects

What our government MUST do immediately to assist parents and carers give their children with FASD the best possible opportunity in life

 

 

  • Prepare and televise a national education campaign developed in consultation with parents and carers of children with FASD

  • Acknowledge FASD as a disability

  • Research mainstream prevalence and incidence rates of FASD and allocate resources accordingly

  • Legislate for warning labels on all alcohol products to alert women of dangers of drinking during pregnancy

  • Educate all health professionals in recognising, assessing and referral of patients with possible FASD

  • Expand multidisciplinary diagnostic centres across the nation in conjunction with research monitoring and evaluation using the Gold Coast diagnostic clinic as the exemplar

  • Provide FASD specific services and programs for those diagnosed with FASD and |or make FASD training mandatory for all staff likely to come into contact with people with FASD and their families

  • Ensure all teachers can informally identify children likely to have FASD and understand their needs and interventions which will reduce likelihood of children acquiring secondary disabilities at school

  • Recognise human rights of individuals with FASD and provide appropriate services and advocacy for those caught up in justice system.

 

 

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Western Australia has FASD Support Group launched on FASDAY on the 9th September 2015

September 9, 2015. 10:00 AM. Port Kennedy, Western Australia
Coffee morning and casual support group to establish a chapter of the RFFADA support group here in Western Australia. Address: C3R church 5 Stockton Rd Port Kennedy

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The Pledge

Stamp out the Stigma of birth mothers of children with FASD (Fetal Alcohol Spectrum Disorders)

Petition text:

I pledge to work to Stamp out the Stigma of birth mothers of children with FASD.  I join the rffada, NOFAS and the NOFAS Circle of Hope in supporting this campaign, and I believe:

  • Blaming and shaming birth mothers of children with FASD serves only to stigmatize women and their families and does not help to prevent FASD.  Having the courage to speak out as a birth mother and share one’s story takes courage and DOES help to prevent FASD.

  • Women who drink alcohol during pregnancy and have a child with FASD nearly always fall into three categories:

    1. They suffer from the disease of alcoholism and are unable stop drinking alcohol on their own

    2. They are not aware that they are pregnant

    3. They are unaware or are misinformed about the risks of alcohol to their unborn baby

  • The stigma of birth mothers increases society’s indifference to FASD and is a major barrier to helping individuals living with the disorders.
  • Women who use alcohol during pregnancy should be provided with appropriate medical intervention, support, and resources to recover from the disease of alcoholism
  • When writing or talking about individuals living with FASD, people-first language should be used, placing the person before the disability.
  • When writing or talking about FASD, language describing the biological basis of FASD should be used (FASD is associated with prenatal alcohol exposure) instead of language describing a behavioral basis (FASD is associated with a woman’s consumption of alcohol during pregnancy).
  • The NOFAS Circle of Hope peer-mentoring program exists to help women cope with their grief and remorse. Empowerment and support helps keep moms sober and helps to prevent FASD.
  • Healthcare professionals are vital to FASD prevention and ending the stigmatization of birth mothers. They should ask female patients about their alcohol use in an open and non-judgmental manner.
  • Incarcerating women does not prevent FASD. It increases stigma, ignores the possible lack of early awareness of pregnancy, and can prevent appropriate treatment for alcoholism and addiction.
  • Biological, adoptive, and foster parents, caregivers, and everyone can be part of the FASD solution by learning about the disease of alcoholism and addiction, listening to the personal stories of birth mothers, and supporting the mission of the NOFAS Circle of Hope.

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FASDAY 2015 - Where will you be? 9th September 2015

 

The Qld FASD Support Group will hold an event for the 2015 FASDAY on the 9th September 2015.  The event will feature Anne Russell EO of the rffada presenting on what has been accomplished for parents and carers in Australia in the 15 years she has been working in this field.  The event is free and is open to all.

 

 

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RESEARCH

Are you the mother of a child with Fetal Alcohol Spectrum Disorder?  Researchers at Murdoch University would like to talk to you about your early experiences and the role that health professionals and family (and friends) played in influencing your decisions about drinking alcohol during pregnancy.  The purpose of this study is to try and understand who it is that women go to for support and what advice is helpful.  Please click on this link for further information.

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 Caregiver Kick Start Training Video

 Check out the first video in Jeff's FASD Training Video Series! If you ever wanted to learn more about Fetal Alcohol or have a loved one who could use some more understanding - then please click the link. The Caregiver Kick Start is absolutely AMAZING!!!!

 

Click here

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Criminalising Alcohol Consumption during Pregnancy

  

 The rffada does not support the criminalisation of alcohol consumption during pregnancy. The rffada strongly empathises with the many Australians living with FASD and their need for access to services, the staff of which have been trained in the delivery of FASD-friendly programs, interventions and strategies. The rffada advocates for FASD to be recognised by the government as a disability and urges governments at all levels to invest in interventions and direct assistance to individuals with an FASD. However, the rffada does not support the premise that an individual with a FASD is a victim of a crime and, therefore does not support any form of compensation that has the effect of criminalising alcohol use during pregnancy. 

 

Paraphrased from a statement written by NOFAS

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 Study confirms dangers of fetal alcohol exposure

 Research led by Biology PhD student Ben Laufer, right, under the supervision of Biology professor Shiva Singh, has confirmed earlier findings that exposure to even low levels of alcohol during pregnancy impacts gene expression and molecular alterations in the brains of newborns.

 

“Even a single binge dose of alcohol, at any time during pregnancy, results in alterations in gene expression and associated FASD-related (characteristics),” Laufer said.

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AMA Alcohol Summit

 The Summit culminated in eight recommendations forming a Plan of Action for the Australian Government however, none mentioned FASD other than acknowledging it as one of the many effects of alcohol use.

 

The rffada respectfully requests that the AMA considers the inclusion of a more robust and action orientated recommendation specifically for FASD comprised of 3 parts:

 

 a.     An ongoing, national educational campaign which offers details on the     benefits of abstaining while pregnant, before conception and while breastfeeding. Combined with this message will be details of the condition itself citing symptoms, signs and characteristics. This message will be given in such a way as to avoid panic but inform the public. A campaign such as this will serve to provide the audience [which will consist of a broad range of population, from teenagers to medical professionals], with a consistent message

 

b.     Have FASD acknowledged as a disability by the federal government.

 

c.     Reduce the frequency of mis-diagnosis of FASD so that children do not have multiple diagnoses which ignore the brain-based cognitive impairment of prenatal exposure to alcohol

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Thank you to Fetal Alcohol Syndrome Information Network

Peggy Oba and her family organisation The Fetal Alcohol Syndrome Information Network have made a welcome donation to the rffada. Thank you Peggy and family, this will mean printed brochures and posters to distribute to organisations and additional support for our parents and carers

 

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