Guest blog: Thoughts on the FASD International Conference- Shelley More

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20190405_183033I had the great fortune to attend 3 days of the International FASD Conference, Vancouver at the beginning of March thanks to the generous sponsorship of CanFASD.  With this support, I was blessed to learn what’s happening around the world with regards to FASD and feeling connected to a greater community.

First, being with the 800+ researchers, clinicians, service providers, caregivers and people living with FASD was uplifting, overwhelming and encouraging. To spend 3 days immersed in what’s going on in FASD research and interventions brought a sense of hope and empowerment that I had never felt before.  The group, that brought me to tears though, was the FASD Change Makers…they filled me with hope, inspiration and a path going forward for my children, our family and the Rural FASD Support Network that I will highlight in my second blog.

For this blog, I really like to learn about how the brain works and am fascinated by all things neuroscience and want to share the four workshops that made me go AHA!

  • Alterations in the Gut Microbiota Following Prenatal Alcohol Exposure (PAE): Tamara Bodnar, Univ. of British Columbia – I found this to be interesting work. Dr. Bodnar was talking about how our gut communicates with the central nervous system and that immune cell hyperactivity may be influencing brain, behaviour, cognition, emotion and pain processing in PAE adult rats. My understanding is that the early research suggests a linkage and that PAE affected rats have more difficulty with memory and learns tasks at a slower rate. This further supports the concept that FASD is not just a brain-based disability but PAE affects many other body systems including immune systems and gut health. As a mom, I’ve noticed that my daughter, Skylar’s gut health has always been precarious, and to think that her PAE might give some insight into her gut health, memory retention challenges, and anxiety was illuminating.
  • The Collaborative Initiative on FASD Plenary Michael Suttie, Univ. of Oxford and Dr. Joanne Wienburg, Univ of British Columbia– There was lots of great research on improving outcomes for people living with FASD across the life span specifically focused on the genetics of FASD and the biomarkers of exposure and risk. What stood out for me was the advancement of 3D facial imaging to identify those who have been prenatally exposed to alcohol.  This research by Dr. Suttie could revolutionize the way the sentinel features get measured, analyzed and reported. Not only has he been able to demonstrate high reliability, but his team is also creating software that would generate a report for clinicians explaining the results. Currently, in Ottawa, we rely on a geneticist to hand measure with a ruler, but this 3D imaging would give higher degree of accuracy. Dr. Suttie has been comparing a costly $10,000 3D imaging camera with some more budget friendly cameras such as the iPhone X to see if this could be used to increase accessibility to screening.  His project is funded until 2022 and aims to have this on the market by 2022. Dr. Joanne Wienburg and her team from the University of British Columbia has been working on biomarkers for two purposes.  They are trying to determine if they can find a signature biomarker for PAE, as well as predict child outcomes for neurodevelopment delays through immune dysregulation and specifically cytokines. Her research has been able to identify several networks that could both confirm PAE but also neurodevelopment delay. She once again mentioned the whole-body disorder and the role immune function plays. In combination with the epigenetic biomarker research, this could eliminate the need for maternal disclosure in diagnosing FASD.  What a game-changer that would be! This plenary was a full morning so please go to the link provided below if interested in the full details.
  • Families Moving Forward – Connect: Developing a Mobile Health Intervention for Families Raising Children with FASD Christina Petrenko, Ph.D. and Dr. Christiano Tapparello, Ph.D. from the University of Rochester, Mt Hope Family Centre have been developing an app for mobile health interventions utilizing the Families Moving Forward program. The intent of the app is to remove barriers to provide support for families caring for people living with FASD reducing geographical and time limitations. This app helps families learn about FASD – joys and rewards of their child, understanding brain-based disability, profile graphs, reframing, accommodations, self care, learning modules, behaviour tracking and plans, resource sheets, and family forum, etc.  In addition, you can share information with your child’s teachers, health care providers, and anyone else that might benefit from FASD knowledge whose helping care for your child. The mobile health intervention will provide scientific, evidence-based content and peer-moderated support that’s easily accessible. I can see the benefit of this app because I find trying to remember everything everybody needs to know about my children is overwhelming. This app takes care of all that. I only document once and everybody working with my children can have access to it. They just finished prototype and starting with beta-testing right now.
  • The Golden Tie – Understanding and Supporting Healthy Sleep in FASD – Dr. Ana Hanlon Dearman, Developmental Paediatrician, Manitoba FASD Centre, University of Manitoba. An absolute WOW!! presentation. Hanlon-Dearman is such a great presenter and knows how to describe complex issues in simple terms.  We struggle with our son, Jacob’s sleep and have been trying different strategies, but as he gets older it’s getting harder and harder. Dr. Hanlon-Dearman capably gave an understandable picture of what it takes for good sleep and how our kids may be affected including circadian considerations, sleep hygiene principles, and sensory challenges. She then went on to discuss what interventions she uses such as sensory strategies environment, Cognitive Behavioural Therapy (CBT), and medications.  She really emphasised knowing your targeted outcome. Her insight and empathy for caregivers was encouraging and informative.


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