Looking for Adolescents with FASD for an Intervention Study in Vancouver and Edmonton!

The Prevention Conversation: A Shared Responsibility Project

The University of Alberta and University of British Columbia are doing an intervention study in self-regulation for adolescents with FASD in the Edmonton and Vancouver areas.

They are looking for participants aged 11 – 17 who have a diagnosis of FASD.

The intervention will take place over about 12 weeks and will include weekly 1-hour one-to-one intervention sessions focusing on improving self-regulation.

VANCOUVER STUDY AD:

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EDMONTON STUDY AD:

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Dads’ Age, Alcohol Consumption Cause Epigenetic Changes In Sperm That Increase Kids’ Risk Of Fetal Alcohol Syndrome

The Prevention Conversation: A Shared Responsibility Project

baby

Although we may put a lot of emphasis on how a mother’s lifestyle choices can affect the health of her future children, a recent review has shown that a father’s age and lifestyle may be just as important.

The study, now published online in the American Journal of Stem Cells, has identified the effect that male lifestyle can have on the health of his future offspring. The team reviewed past research that focused on how a man’s lifestyle could cause epigenetic changes in his sperm’s DNA that could eventually affect his offspring’s genome. Among its findings, the study revealed that fathers who are alcoholics could unknowingly influence the organ structure and gene expression in their offspring, causing significant health problems such as fetal alcohol spectrum disorder (FASD).

This is a serious health condition that causes significant birth defects and learning difficulties in children, and according to the study, can still…

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International Conference on FASD: Conference Presentations

The Prevention Conversation: A Shared Responsibility Project

FASD2017-2Conference Presentations

Please find below the PDFs and video recordings from the conference presentations.

Pre-Conference: Wednesday, March 1, 2017

Evolutionary Origins of Stigma and the Intersectionality of FASD

Peter W. Choate
https://admin.video.ubc.ca/p/113/sp/11300/embedIframeJs/uiconf_id/23448209/partner_id/113?iframeembed=true&playerId=kaltura_player&entry_id=0_q4d56drz&flashvars%5BstreamerType%5D=auto&flashvars%5BleadWithHTML5%5D=true&flashvars%5BsideBarContainer.plugin%5D=true&flashvars%5BsideBarContainer.position%5D=left&flashvars%5BsideBarContainer.clickToClose%5D=true&flashvars%5Bchapters.plugin%5D=true&flashvars%5Bchapters.layout%5D=vertical&flashvars%5Bchapters.thumbnailRotator%5D=false&flashvars%5BstreamSelector.plugin%5D=true&flashvars%5BEmbedPlayer.SpinnerTarget%5D=videoHolder&flashvars%5BdualScreen.plugin%5D=true&&wid=0_6724p4ei

The Neuroscience of Addiction: Is it a Choice?

George F. Koob
https://admin.video.ubc.ca/p/113/sp/11300/embedIframeJs/uiconf_id/23448209/partner_id/113?iframeembed=true&playerId=kaltura_player&entry_id=0_qcgnpg6u&flashvars%5BstreamerType%5D=auto&flashvars%5BleadWithHTML5%5D=true&flashvars%5BsideBarContainer.plugin%5D=true&flashvars%5BsideBarContainer.position%5D=left&flashvars%5BsideBarContainer.clickToClose%5D=true&flashvars%5Bchapters.plugin%5D=true&flashvars%5Bchapters.layout%5D=vertical&flashvars%5Bchapters.thumbnailRotator%5D=false&flashvars%5BstreamSelector.plugin%5D=true&flashvars%5BEmbedPlayer.SpinnerTarget%5D=videoHolder&flashvars%5BdualScreen.plugin%5D=true&&wid=0_heqmoqay

The Science of Stigma

Patrick Corrigan
https://admin.video.ubc.ca/p/113/sp/11300/embedIframeJs/uiconf_id/23448209/partner_id/113?iframeembed=true&playerId=kaltura_player&entry_id=0_e6ien899&flashvars%5BstreamerType%5D=auto&flashvars%5BleadWithHTML5%5D=true&flashvars%5BsideBarContainer.plugin%5D=true&flashvars%5BsideBarContainer.position%5D=left&flashvars%5BsideBarContainer.clickToClose%5D=true&flashvars%5Bchapters.plugin%5D=true&flashvars%5Bchapters.layout%5D=vertical&flashvars%5Bchapters.thumbnailRotator%5D=false&flashvars%5BstreamSelector.plugin%5D=true&flashvars%5BEmbedPlayer.SpinnerTarget%5D=videoHolder&flashvars%5BdualScreen.plugin%5D=true&&wid=0_xbjj7a8i

How Social Media Anonymity and the Words We Use Sustain Stigma

Kathleen T. Mitchell
https://admin.video.ubc.ca/p/113/sp/11300/embedIframeJs/uiconf_id/23448209/partner_id/113?iframeembed=true&playerId=kaltura_player&entry_id=0_i8mo2ndu&flashvars%5BstreamerType%5D=auto&flashvars%5BleadWithHTML5%5D=true&flashvars%5BsideBarContainer.plugin%5D=true&flashvars%5BsideBarContainer.position%5D=left&flashvars%5BsideBarContainer.clickToClose%5D=true&flashvars%5Bchapters.plugin%5D=true&flashvars%5Bchapters.layout%5D=vertical&flashvars%5Bchapters.thumbnailRotator%5D=false&flashvars%5BstreamSelector.plugin%5D=true&flashvars%5BEmbedPlayer.SpinnerTarget%5D=videoHolder&flashvars%5BdualScreen.plugin%5D=true&&wid=0_6p8e1ata

Panel Presentation: Living with Stigma – the Not So Pretty

Bernadette Fuhrmann, Niall Schofield, Myles Himmelreich
https://admin.video.ubc.ca/p/113/sp/11300/embedIframeJs/uiconf_id/23448209/partner_id/113?iframeembed=true&playerId=kaltura_player&entry_id=0_gskpjwbf&flashvars%5BstreamerType%5D=auto&flashvars%5BleadWithHTML5%5D=true&flashvars%5BsideBarContainer.plugin%5D=true&flashvars%5BsideBarContainer.position%5D=left&flashvars%5BsideBarContainer.clickToClose%5D=true&flashvars%5Bchapters.plugin%5D=true&flashvars%5Bchapters.layout%5D=vertical&flashvars%5Bchapters.thumbnailRotator%5D=false&flashvars%5BstreamSelector.plugin%5D=true&flashvars%5BEmbedPlayer.SpinnerTarget%5D=videoHolder&flashvars%5BdualScreen.plugin%5D=true&&wid=0_5yruhs8b

Main Conference: Thursday, March 2, 2017

The Prevalence and Epidemiologic Characteristics of FASD in General Populations of the United States: Final CoFASP Results

Introduction by: Kenneth R. Warren | Plenary: Philip A. May, Christina D. Chambers
https://admin.video.ubc.ca/p/113/sp/11300/embedIframeJs/uiconf_id/23448209/partner_id/113?iframeembed=true&playerId=kaltura_player&entry_id=0_7j37t1hq&flashvars%5BstreamerType%5D=auto&flashvars%5BleadWithHTML5%5D=true&flashvars%5BsideBarContainer.plugin%5D=true&flashvars%5BsideBarContainer.position%5D=left&flashvars%5BsideBarContainer.clickToClose%5D=true&flashvars%5Bchapters.plugin%5D=true&flashvars%5Bchapters.layout%5D=vertical&flashvars%5Bchapters.thumbnailRotator%5D=false&flashvars%5BstreamSelector.plugin%5D=true&flashvars%5BEmbedPlayer.SpinnerTarget%5D=videoHolder&flashvars%5BdualScreen.plugin%5D=true&&wid=0_6r3zt8tz

A1. 4 Oral papers

A1d – Social Communicatory Deficits, Autistic Spectrum Disorder and Other Neurodevelopmental Consequences Across the Lifespan Associated with Prenatal Alcohol Exposure and FASD: Findingsfrom the UK FASD…

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New Research

Adults with fetal alcohol syndrome appear prone to health conditions, survey says

Study found adults with FASD have greater illness rates than general population

By Linda Givetash, The Canadian Press Posted: Mar 03, 2017 12:50 PM PTLast Updated: Mar 03, 2017 12:50 PM PT

Emily Travis, left to right, Myles Himmelreich, and C.J. Lutke are the researchers behind a survey that found adults with fetal alcohol spectrum disorder suffer from other medical conditions at higher rates than the general population.

Emily Travis, left to right, Myles Himmelreich, and C.J. Lutke are the researchers behind a survey that found adults with fetal alcohol spectrum disorder suffer from other medical conditions at higher rates than the general population. (Jonathan Hayward/The Canadian Press)

 

Myles Himmelreich has struggled with significant joint pain since he was a teen, yet he didn’t get a proper diagnosis of arthritis until he was in his mid-30s.

His young age and the fact he is diagnosed with fetal alcohol spectrum disorder may have prevented doctors from considering testing his joints sooner — a problem he says is all too common for adults with the disorder, a spectrum of irreversible developmental issues resulting from alcohol exposure in the womb.

Himmelreich, CJ Lutke and Emily Travis co-authored a survey of 541 people living with the disorder in Canada and the United States to see how commonly they experience other physical and mental health conditions. Their findings are being presented Saturday in Vancouver at a conference hosted by the University of British Columbia.

Health problems up to 100 times more likely

Of over 260 questions pertaining to conditions in 25 areas, such as hearing, autoimmune or cardiovascular disease, they found that people with the disorder experienced health problems at a rate that was anywhere from two times to more than 100 times higher than the general population.

The three authors, who all live with the disorder, met at a previous international conference and advocate to reduce stigma about the disorder. They had the idea for the survey in 2013 while discussing their array of health issues and hearing similar complaints from others.

Completing the survey, they were surprised to find how prevalent those health problems are.

“Do our bodies age and break down faster? I think it seems like it. There are times where I especially feel like an old lady,” said Lutke, 33.

Other health problems often go unnoticed

Among the general population, about five to eight per cent of people suffer from a total of 80 autoimmune diseases. Yet the survey found that 29.5 per cent of people living with fetal alcohol spectrum disorder who were surveyed reported having at least one of only 10 of those diseases, including rheumatoid arthritis, celiac disease and lupus.

The rate of chronic ear infections among adults who were surveyed was 147 times higher than the general population, and 8.1 per cent of those who took part in the survey reported having hearing loss or problems that began after the age of 20.

Early onset dementia, which happens in people under the age of 65, also affected people in the study at a rate that is 104 times higher than the general population. The average age of respondents in the survey was 27 ½ years old.

Himmelreich said the premature development of diseases means that sore knees in teens can be written off as growing pains or wear and tear rather than something more complex.

Studies usually focus on children

Depending on the condition, there can be serious implications of going undiagnosed and untreated.

With 90 per cent of respondents reporting trips to the emergency room and multiple hospitalizations, Lutke said she wonders if misdiagnoses or failure to test symptoms are to blame.

“How many disorders are diagnosed as mental issues when they actually have a physical cause?” Lutke asked.

The vast majority of studies on people living with the disorder have looked at children rather than adults, and many have focus only on behaviour, cognitive development or physical characteristics.

Himmelreich said their goal with the survey findings was to raise new questions in the medical community about the effects of the disorder and encourages clinicians to think about their patients differently.

“We want them to see FASD as not just the brain, because we know and understand so much information about the brain, but also to see how it’s affecting the whole body,” he said.

In the coming months, the team intends to work on having their findings published to reach a broader audience.

http://www.cbc.ca/news/canada/british-columbia/fetal-alcohol-study-1.4009083

Participants wanted for a group interview study about FASD!

Edmonton and area Fetal Alcohol Network Society

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Participants wanted for a group interview study about FASD!

 We want to talk to you about your experiences with FASD. In particular, we want to hear your thoughts and feelings about examples of Canadian FASD media coverage, to think about how to communicate effectively in the future. Your perspective is invaluable for understanding FASD.

Who can participate?

We want to include key stakeholders, like: 1) adults with FASD; 2) parents of and caregivers for people with FASD; 3) healthcare professionals with experience diagnosing or caring for patients with FASD; and 4) FASD communicators (e.g., journalists, public health official). We are almost done the interviews, so we are only looking for adults with FASD and biological moms right now.

What does the study look like?

This study will involve participation in a 90-minute group interview in English. Each group interview will only include one stakeholder group (e.g., only adults with…

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