#BeAware

ABOUT FASD AWARENESS

About FASD Awareness

Registered in 2018, FASD Awareness is a charitable organisation with a clear vision – where all people are aware of the dangers of alcohol use during pregnancy and mothers are supported to stay healthy and strong during pregnancy, and individuals living with Foetal Alcohol Spectrum Disorders (FASD) are identified, recognised, valued and supported.

How much alcohol does the Government say is safe to drink during pregnancy?

 

There have been conflicting views surrounding this subject for some years. We hear of stories of doctors still saying a glass of red wine is ok! Some years ago, it was recommended to drink half a pint of Guinness a day to help a woman’s iron levels! Today this is hard for us to conceive. Overcoming the ideas and perceptions of many years is one of our biggest challenges.

 

​At FASD Awareness we follow the UK’s Chief Medical Officer’s recommendation that, "If you are pregnant or planning to become pregnant, the safest approach is not to drink alcohol at all to keep risks to your baby to a minimum. Drinking in pregnancy can lead to long term harm to the baby".

Why is our work needed?

FASD is a disability which often remains hidden or misunderstood by the wider population. This condition is the most common cause of neurodisability in the Western world and presents around 3-6 times the rate of Autism Spectrum Disorder in the UK (McGruer 2018)

A new study by the Canadian Centre for Addiction and Mental Health (CAMH), published in the Lancet Global Health, has shown that more than 40% of pregnant women in the UK drink while pregnant, placing the UK among the five countries in the world with the most prevalent alcohol use during pregnancy (alongside Russia, Ireland, Denmark, and Belarus). 

“There are more children born each year with FASD than with Autism Spectrum Disorder, Spina Bifida, Cerebral Palsy, Down Syndrome and Sudden Infant Death Syndrome (SIDS) combined“.  (Shelly L Bania, BA, CPC-R, Project Director for Federal contract(s) Screening, Referral for Diagnosis and Case Managed Treatment Plans for Youth with an FASD, and FASD Prevention)

The research also found that Britain has one of the highest rates of Foetal Alcohol Syndrome (FASD) in the world, with an estimated 61.3 cases per 10,000 births – significantly higher than the global average of 15 per 10,000, ranking the 44th worst in Europe.

 

Foetal alcohol syndrome can leave babies with learning difficulties, behavioural problems, hearing and vision loss, poor growth and organ damage. The problem is growing too; worldwide, an estimated 119,000 children are born with FASD, and although the exact prevalence of UK cases is not known, one newspaper reported a 37% jump in the number of cases in England between 2010 and 2013. 

The existing provision for individuals with FASD is very limited. This is because FASD is still a much misunderstood and misdiagnosed condition. Those living with it and their parents/carers and families struggle to get the support they need to be as independent and successful in life as possible. 

FASD Awareness is proud to be a member of the FASD UK Alliance, which is a coalition of groups and individuals from across the UK who are united together for positive social change for those with Foetal Alcohol Spectrum Disorders (FASD). 

Summarised projects and activites

In the last two years, we have seen an increase of over 500% in the number of families seeking our help and in order for FASD Awareness to be able to fully support individuals with FASD and their families/carers. During Christmas 2019, we moved The Oast Community Centre in Rainham, a more neutral/appropriate venue, where we can accommodate larger numbers of children with FASD and be able to undertake activities such as: 

  • Sensory play

  • Lego therapy

  • Art therapy

  • Technoplay

  • Music therapy 

Previously, we had use of a room for free at ISP Rainham centre (a foster agency) to facilitate our support groups. The Oast Community Centre in Rainham now contains our office space and meeting rooms for our support groups and private one to one signposting sessions for parent and carers.

FASD IS A SERIOUS PUBLIC HEALTH ISSUE

  • FASD occurs in all parts of UK society where alcohol is consumed and is a social issue not just a medical condition.
     

  • A recent UK based study showed up to 17% of children screened had symptoms consistent with FASD. (Dr Cheryl McQuire, researcher in epidemiology and alcohol-related outcomes at the University of Bristol led the research, which is published in the journal Preventative Medicine. Nov.2018. This research was achieved in conjunction with Dr. Raja Mukherjee)
     

  • The UK has the fourth highest level of prenatal alcohol use in the world, and around three quarters of looked-after children are deemed at risk (McQuire, Mukerjee 2018). 
     

  • FASD is a disability which often remains hidden or misunderstood by the wider population.  This condition is the most common cause of neurodisability in the Western world and presents around 3-6 times the rate of Autism Spectrum Disorder in the UK (McGruer 2018).
     

  •    “There are more children born each year with FASD than with Autism Spectrum Disorder, Spina Bifida, Cerebral Palsy, Down Syndrome and Sudden Infant Death Syndrome (SIDS) combined 

Despite slow but steady progress, there is still not enough training or research funding, and a lack of understanding still in the general population about FASD. If more awareness and training isn't rolled out to the medical professionals, non-medical professionals and teachers, children will be misdiagnosed and left without the suitable provisions in place to support them to lead fulfilled lives. We believe that research and a greater understanding of FASD is not only essential to those living with FASD but will have a significant effect on society as a whole in the future.

Through FASD Awareness #BeAware campaign we are increasing both the public & professionals’ awareness of the lifelong physical and/or neurodevelopmental impairments that can result from foetal alcohol exposure and of the lifelong impacts on individuals, their families, caregivers and the wider community.

 

With the knowledge of dedicated professionals, passionate and experienced carers, volunteers and our inspiring ambassadors living with FASD, we have launched a media campaign, training & education services, and invaluable monthly support groups to families and organisations nationally. We are a valuable source of signposting to the necessary provisions throughout the country.

 

When we were preparing the second of our commissioned films, we met with an amazing pioneering birth mother (Pip Williams). She was a huge influence on challenging our thinking around the reasons why a woman might drink alcohol during pregnancy. Sadly, Pip recently passed away, however her valuable message continues to spread, and take away the stigma, and preconceived ideas surrounding birth mothers.

Over the past couple of years there has been a seismic shift in the understanding and even the language that we use referring to all things FASD, supported by the research and data compiled by pioneering organisations in Australia, US and Canada. Here at FASD Awareness we follow this move and try to promote education, understanding and support in a respectful and non-judgmental manner in order to reduce the negativity and stigma often associated with FASD.

 

In 2019 our work in the South East region of Britain was acknowledged and we were awarded the High Sherriff of Kents' Award.

The High Sheriff of Kent Awards 2019 (Left to right):  Jane Ashton, Tracy Allen FASD Awareness
Co-Founder, Steven FASD Awareness Ambassador and Andrew Keeping FASD Awareness Chairman.

Our Journey

FASD Awareness was founded in 2015 by Tracy Allen and Sharon Jackson. 

 

Having fostered children with FASD for over 14 years, Tracy’s strive for a greater understanding of the condition, the need to build a network of professionals with the necessary knowledge, and her tenacity to help others living with FASD, led her to launch the FASD Awareness Campaign in 2015 with Sharon, setting out to raise a greater awareness of the condition and supporting those living with it.

 

Sharon has fostered over 40 children spanning the past 23 years, whilst also working for the NHS in various roles, including Bereavement Officer at St Thomas' Hospital, London. When Sharon decided to adopt 5 children with FASD, her fight to understand, support and find the best care for her children led her on a 10-year journey to campaign and raise awareness of the condition.

 

Tracy and Sharon’s experiences in caring for children and adults with FASD has introduced them to a vast network of support and a wealth of useful advice. The difficulties and struggles they have faced during this time have led them to share their own knowledge and experience with others living with FASD.

 

Our Co-founders could not have imagined the task ahead but caring for children with FASD has taught the ladies one thing – never give up and keep fighting! 

 

In September 2016 the FASD Awareness Campaign hosted a spectacular 'FAS Ball' at Gillingham Football Club. The event was supported by local businesses and included celebrity performances, emotional speeches and films, and an award presented to Dr Kate Ward MBE. The campaign received generous donations, including a large donation from The Tunstall Jubilee Fund, raising enough money to allow them to fulfil their dream and begin setting up as a Charity.

 

Many volunteers came forward and a board of devoted and passionate trustees, covering a wide skillset, was established. In February 2018 FASD Awareness became a Registered Charity. Tracy and Sharon were now able to begin their journey in earnest, offering information, monthly support groups, training, advice and guidance on obtaining diagnosis and signposting to various other services.

At the start of 2019, Sharon took the decision to stand down from the charity to concentrate on her many other commitments. We would like to thank her for all her hard work and dedication to make life better for those living with FASD and wish her and her wonderful family all the best for the future.

 

FASD Awareness would like to thank everyone for their support in helping us continue to make a difference to the lives of those living with FASD.

How You Can Support Our Work

We receive no money from the Government, so we are 100% reliant on the generosity and support of members of the public and grant-making organisations to be able to support people living with FASD in the South East.

 

We are the only FASD related charity specifically serving the South East Region. FASD Awareness has been providing individuals and caregivers with a free FASD monthly support group for over two years. We have been told by many that this has been a lifeline to them, alongside the telephone support.

 

 We are always looking for enthusiastic people to help with our work and raise a greater awareness about FASD. We have a range of volunteering opportunities for you to get involved with, from helping us raise much needed funds to distributing resources to spread the word about our vital support services.

 

If you would like to help us with our fundraising, please email: fundraising@fasdawareness.org.uk

To make a donation or become a volunteer, please email: info@fasdawareness.org.uk

FASD Awareness are strongly committed to safeguarding and promoting the welfare of children and vulnerable adults.

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e: info@fasdawareness.org.uk

t: +44 (‭0) 1634 566 323‬‬

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Our thanks go to The Kent Reliance Provident Society Fund and The Hurst-Brown Family Fund for their generous support, both kindly administered by Kent Community Foundation. 

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© 2020 FASD AWARENESS

 

FASD AWARENESS is an independent charity registered in England and Wales. Charity No: 1176933.