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Families, researchers and government officials on campus to talk about Fetal Alcohol Spectrum Disorder (FASD).

By Costa Maragos Posted: August 30, 2016 6:00 a.m.

(l-r) Audrey McFarlane, Interim Executive Director of CanFASD; Dr. Michelle Stewart, associate professor, Justice Studies; Dorothy Reid, family advisor committee, CanFASD; and Dr. Allan Bocking, CanFASD scientific advisor.
(l-r) Audrey McFarlane, Interim Executive Director of CanFASD; Dr. Michelle Stewart, associate professor, Justice Studies; Dorothy Reid, family advisor committee, CanFASD; and Dr. Allan Bocking, CanFASD scientific advisor. Photo: external relations.

A national conversation on dealing with Fetal Alcohol Spectrum Disorder is taking place on campus.

The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) has brought together representatives from a variety of fields of expertise. They include researchers, policy makers, health workers, social work officials in conversation with those that have FASD and parents/caregivers.

“The focus for us is to bring together family members and folks who have FASD with researchers to figure out what are the issues and challenges facing families,” says Dr. Michelle Stewart, assistant professor in the Department of Justice Studies and one of the organizers of the conference.

Stewart has conducted extensive research into FASD.  

Her latest project is the completion of a summer-long research trip, scanning programs and practices across the country relating to FASD. She will present her findings at a national justice symposium held in Regina February, 2017.

The conference delegates heard from President Dr. Vianne Timmons and the story of her daughter, Kelly, who has FASD.

 “Kelly has asked me to speak publicly about fetal alcohol spectrum disorder. It’s really important that she herself has given me that permission and wants me to speak because she feels there’s so much not understood about the syndrome,” says Timmons.

“Kelly went through school on the receiving end of a tremendous amount of bullying. She was ostracized, and she was lonely. But through all that, she has grown into a very generous woman who has achieved far more than anyone believed she could. She’s tenacious, and she has more willpower than anyone I have met in my entire life.”
 
Timmons says her daughter’s experience underlines the importance of the research being done into FASD at the U of R and elsewhere.

“We have a lot of work to do about this disorder and this workshop is a wonderful initiative in terms of building understanding.”
 
Key topics discussed at the conference include children with FASD in the school system, over-representation of people with FASD in the justice system, and FASD supports and strategies.

“FASD is the most common preventable cause of developmental disability in Canada, so we need to make sure we’re setting research goals the right way.
It’s important to know what caregivers - the people navigating FASD day-in-day-out - think, and what FASD research experts think,” says Audrey McFarlane, CanFASD interim executive director.

The conference is a nation-wide collaboration, bringing together people from across disciplines and from across the country, including the western provinces, Ontario and New Brunswick. Prior to the event, CanFASD and the Family Advisory Council members conducted focus groups to get feedback from those who were unable to attend the event, and an online survey was posted.

The conference was made possible thanks to support from CanFASD, the Canadian Institutes of Health Research (SPOR) and the U of R.

“I’m excited that this is happening in Regina and especially at our university,” says Stewart. “This gives us a national conversation to have in our backyard. At the same time it gives an opportunity for people from Regina and from around the province to be in attendance.”