“On 9th September, International FASD Day, The National Organisation for FASD launches new online resources for families and professionals…with a song.
Walk Along With Me is performed and co-written by young people living with this complex condition.
Fetal Alcohol Spectrum Disorder (FASD) is a lifelong brain-based condition that can result from alcohol-exposed pregnancies. It affects more people than autism but is largely undiagnosed and misunderstood.
The National Organisation for FASD believes there is no one better to advocate for greater understanding than those young people who live with FASD. The organization has released Walk Along With Me, a song and video created with input from more than 70 people with FASD. Eduardo Jackson, a young adult with FASD who contributed some lyrics and performed in the video said, “We needed something that could explain what those of us with FASD go through in our lives living with this condition. The best way I think we could have done this was by singing about it, as its easier than listening to someone explain what it is and how it affects them.”
“As mum to a teen with FASD, this song and the hope it represents bring tears to my eyes my eyes every time I hear it,” says Sandy Butcher, Chief Executive of The National Organisation for FASD. “It’s time the voices of those with FASD are heard. The fact this song was created through a grant from the Department of Health is a sign that change is coming.”
This song is available as a pre-release from a new Me and My FASD website (www.FASD.me). The full website will launch in October as part of The Seashell Trust-National FASD partnership project funded by the Department of Health in its first-ever round of grants specific to FASD.
Butcher said, “With more work to be done before those with this condition get the support they deserve and are entitled to, the website and accompanying resources are timely and essential.” Also scheduled for release from this project in September are a new Best Practice in FASD Training Guide and FASD: UK Preferred Language Guide to help ensure non-stigmatising language is used. Dates for a series of trainings for professionals based on these principles have already been released.
The National Organisation for FASD believes information is power. It also is launching its new website for FASD Day with a multitude of resources for families and professionals (www.NationalFASD.org.uk). It also hosts the http://www.PreventFASD.info website that is designed for 15-25 year olds, and includes a national #WhyRiskIt competition, offering a £1000 grand prize.
9th September is International FASD Awareness Day. The ninth day of the ninth month was chosen as a reminder of the risks associated with drinking alcohol during the nine months of pregnancy, and also to celebrate the achievements of those who live with the condition. Those risks include significant brain damage, impaired motor skills, heart murmurs and joint problems.”
Find more from Me and My FASD (September 2020, UK)