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November 15, 2021 23 min

Welcome to FASD Family Life the podcast for families by families where we get real about raising children and youth with Fetal Alcohol Spectrum Disorder. I’m your host, Robbie Seale, FASD Educator, advocate and mom of four children with FASD.  I know the struggle is real, but so is success. I hope that sharing my experiences can help you feel that you are not alone and that there is hope for you and your child with FASD.  

Welcome to the second episode of the FASD Family Life Podcast - Research & Resource edition featuring The Ready of Not Brain-Based Disability Study.

It can be a struggle to find resources and research to support you, your family, and your child with Fetal Alcohol Spectrum Disorder. That's why I have embarked on a new initiative to interview the movers and shakers in the FASD Research and Resources community. Every Monday I will drop a Research & Resource episode to give you information on a variety of FASD Networks, resources, training events, and conferences. I will also bring you information on fascinating FASD studies for your participation and interest.

With the READYorNot™ Brain-Based Disabilities Project, we are developing and evaluating e-health aids to help patients and families take charge of this transition. The CHILD-BRIGHT Network has provided a unique opportunity to develop and test an e-health intervention (app) to improve the transition of care journey. YouTube. CHILD-BRIGHT Network.

To help youth with brain-based disabilities (BBD) prepare for the transition from pediatric to adult health care, we developed the MyREADY TransitionTM BBD App in partnership with patients, families, health care stakeholders, and our industry partner 360Medlink.

We have collaborated closely with our Patient and Family Advisory Council (PFAC) since 2017. In 2019-20 we prepared a randomized controlled trial to see if there are benefits to using the app. The PFAC, which counts five young people among its members, was instrumental in helping the trial take shape. 

Click here to find more info: https://www.child-bright.ca/readyornot

Regional Research Coordinator email:  yomna.elshamy@ahs.ca

You can support the work of the FASD Family Life Podcast and send me some love, when you Buy Me A Coffee using the link below.

Support the show (https://ko-fi.com/fasdfamilylifepodcast)
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