Subject: Message from the Minister of Health – International Fetal Alcohol Spectrum Disorder Awareness Day 2017
Date:     Tue, 12 Sep 2017 15:06
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Message from the Minister of Health – International Fetal Alcohol Spectrum Disorder Awareness Day 2017
by edmontonfetalalcoholnetwork

 

From Public Health Agency of Canada

International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day is marked annually on September 9 to raise awareness about the risks of drinking alcohol during pregnancy and about the challenges that individuals with FASD and their families face.

FASD is a brain injury that can occur when an unborn baby is exposed to alcohol in the womb and the result is a lifelong disorder with effects that include physical, mental and behavioural disabilities. FASD is the leading known cause of preventable developmental disabilities among Canadians.

Children and adults living with FASD, often encounter a great deal of stigma and judgement. This stigma can keep women from openly discussing alcohol consumption with their health care providers, preventing them from accessing the programs, services, and supports they need.

Many factors can contribute to FASD, and there is no single solution to preventing it. That is why the Government of Canada is partnering with provincial and territorial governments, communities, Indigenous organizations and experts to support a variety of education and prevention initiatives.

For example, we are funding five projects that focus on developing knowledge and skills among health professionals on how to screen, counsel and discuss alcohol use with girls and women. The goal of these projects is to help prevent alcohol use during pregnancy and to promote behaviours that set the conditions for lifelong health. We are also supporting the Kids’ Brain Health Network to provide health care professionals, policy makers, caregivers and families with tools and information to promote earlier diagnosis, better treatment and optimal outcomes for children with neurodevelopmental disorders, including FASD.

In order to increase awareness of FASD among First Nations and Inuit communities, as well as educate front-line workers, our government is also developing culturally appropriate prevention and intervention programs that educate and raise awareness about the impacts of FASD. We  are also exploring opportunities to advance the Truth and Reconciliation Calls to Action #33 and #34 related to FASD by working in collaboration with Indigenous people to implement preventive programs that can be delivered in a culturally appropriate manner.

By working together, we can encourage  healthy pregnancies and support those living with FASD. This month, learn more about FASD prevention and join the conversation on social media by using the hashtag #FASD.

Ginette Petitpas Taylor
Minister of Health

http://www.children.gov.on.ca/htdocs/English/specialneeds/fasd/index.aspx

IN THE NEWS

• September 8, 2017
  Letter from Parliamentary Assistant Sophie Kiwala regarding International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day

• July 13, 2017
  Letter from Parliamentary Assistant Sophie Kiwala regarding the Ontario government’s Fetal Alcohol Spectrum Disorder Strategy

Ontario is investing $26 million over four years to expand support for children, youth and families affected by FASD. To increase awareness of FASD, and how it can be prevented, Ontario is supporting six initiatives that will:

• Create one-stop access to information/training resources;
• Provide funding for over 50 FASD workers to support approximately 2,500 Ontarians with FASD;
• Support parent support networks;
• Increase access to FASD initiatives developed by Indigenous partners;
• Establish a consultation group to provide advice and feedback to inform implementation planning and prioritization of efforts; and
• Create a research fund to learn more about FASD, and how to prevent it.

“…The 16-year-old Timmins resident has Fetal Alcohol Spectrum Disorder, and sits on the FASD Awareness Cochrane-Timmins committee…”

http://www.timminspress.com/2017/09/10/teen-advocate-with-fasd-shares-her-story
Timmins Press
NEWS LOCAL

Teen advocate with FASD shares her story
By Emma Meldrum
Sunday, September 10, 2017 7:01:06 EDT PM

[Photo] Amanda Mollins Koene greets people as they enter Hollinger Park for FASD Awareness Day on Saturday.

TIMMINS – Amanda Mollins Koene is an FASD expert, inside and out.

The 16-year-old Timmins resident has Fetal Alcohol Spectrum Disorder, and sits on the FASD Awareness Cochrane-Timmins committee.

“Two and a half years ago I got an official diagnosis,” said Mollins Koene on Saturday, FASD Awareness Day. “It means that sometimes I have trouble controlling my impulses.”

The teen greeted people who stopped by the afternoon’s activities held at Hollinger Park on Saturday. She’s made several speeches about the disorder, and runs a Facebook page dedicated to educating people about it.

“Fetal Alcohol Spectrum Disorder is a disorder that happens when a pregnant mom drinks alcohol. There are facial features, but they only happen within a specific time,” she said.

Mollins Koene said her parents often act as her “external brain.”

“They help me make the right choices, guide me, and help me with that.”

She was adopted at the age of one, but harbours no ill will towards her birth mother.

“I’m not (angry). I can honestly say that if my birth mom came to my door, I’d welcome her. I can honestly say that, because something that sticks to me is a birth mom who cares enough to come and say, ‘I made a mistake.’”

The teen said that sometimes FASD is the result of a mistake – not harmful intent.

“It’s a bit frustrating, but also there’s the moms who don’t know they’re pregnant, and they drink, and there’s moms who are already addicted and can’t stop right like that.”

She said preventing the disorder is simple.

“There’s one thing you have to do: don’t drink alcohol during pregnancy. That’s the only thing you have to do to not get it.”

Her parents, Lyndsay and Job Mollins Koene, said they’re proud of their daughter.

“We’re incredibly proud, and always have been. Amanda is a great researcher, from very early on, she won a couple of science fair competitions here in our city talking about FASD,” said Lyndsay Mollins Koene.

“Amanda is very impulsive, and she’ll tell you that. So whether it’s a spending moment…or a decision-making moment, Amanda sometimes needs someone there next to her, not saying do this, do that, but instead saying, ‘what do you think, what would happen if,’ and pointing out the consequences of one direction or the other,” said her mother.

“She’s a great advocate for anyone working with FASD,” she said.

The Mollins Koene family spent the day at the park, where kids strolled from one activity table to another, and volunteers cooked a barbecued lunch. The end goal was to educate more people about the disorder. The young advocate said it’s a great start.

“It feels great to see so many people here, so many people wanting to learn, so many people asking questions. I like to see that.”

She’d like to see people learning more every day, however. The FACT committee also organized a booth at Welcome to Timmins Night last week, and Mollins Koene will continue to speak about the disorder at events throughout the city.

“Saturday marked Fetal Alcohol Spectrum Disorder Awareness Day.
Those affected in London used the day to lobby for broader awareness and more government support.
R.J. Formanek lives with Fetal Alcohol Syndrome…”

http://london.ctvnews.ca/looking-for-change-on-fetal-alcohol-spectrum-disorder-awareness-day-1.3582547
CTV News London

Looking for change on Fetal Alcohol Spectrum Disorder Awareness Day
CTV London
Published Saturday, September 9, 2017 5:08PM EDT

2:28 Raising FASD Awareness

Saturday marked Fetal Alcohol Spectrum Disorder Awareness Day.

Those affected in London used the day to lobby for broader awareness and more government support.

R.J. Formanek lives with Fetal Alcohol Syndrome and addressed a gathering of others affected at the Westminster Family Centre, telling them, “When I got a diagnosis, it freed me to think, ‘What goes on in my brain, while different is not wrong.”

The founder of “Flying with Broken Wings” was diagnosed at 47 years old, finally able to identify the cause of his life-long behavioral issues, “Won’t sit down, won’t pay attention. Eventually in mental health system, getting care you don’t necessarily need.”

He, along with thousands of others, is trying to bring awareness to the spectrum disorder.

And Saturday also marked the first Red Shoes Walk for the London and Area FASD Support Group. They headed out at 9:09 a.m. on the 9th day of the 9th month, walking 999 meters. The walk is to demonstrate the importance of staying alcohol-free during the 9 months of pregnancy.

…We’re changing the venue for this year and we’ll be gathering at Toronto City Hall Square (Nathan Phillips Square) at the iconic 3D Toronto sign around 6 PM…”

http://www.fasworld.com/events/
fasworld
[FASworld Canada, Toronto]

FASDay 2017 – Our 19th Year!

Every year on September 9th, International FASD Awareness Day is observed in over 62 countries in every time zone around the world. Proclamations are issued in countries, states, provinces, and towns across the globe. Bells are rung at 9:09 a.m. in every time zone from New Zealand to Alaska. People all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Fetal Alcohol Spectrum Disorders (FASD). The first FASDay was celebrated on 9/9/99. This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol. Anytime is a good time to raise awareness about Fetal Alcohol Spectrum Disorders (FASD).

Join your local community on Sept. 9/17 and make sure your event is listed here – email brian@fasworld.com

CANADA

Toronto, ON – We’re changing the venue for this year and we’ll be gathering at Toronto City Hall Square (Nathan Phillips Square) at the iconic 3D Toronto sign around 6 PM. The sign will be in RED all day so remember to wear your RED shoes. Everyone is welcome and your presence will help raise awareness of the most common, most expensive, yet most preventable of all mental disorders in the industrialized world. Members of the top social agencies, members of the provincial and federal legislatures and parents and caregivers are invited  to raise awareness that could save our society $billions. We’re all done by 7 PM. See you there.

Ottawa, ON – See the latest video http://ottawa.ctvnews.ca/video?clipId=926131 CTV News Ottawa: Yummy Mommy Cocktails. Janet Carioni joins the bartender from the St. Louis Bar & Grill to talk about FASD and the FARP program and the restaurant’s event on Sept. 8. Hear the link to the FARP program on Facebook. https://www.facebook.com/FARP09092015/

CTVNews.ca

Women who give birth to children with fetal alcohol spectrum disorder (FASD) are at an increased risk of attempting suicide and dying by suicide, a University of Manitoba study has found.
FASD is a brain development disorder that can occur if a baby is exposed to alcohol in the womb. It can have lifelong effects on the child, including physical, mental, behavioural and learning disabilities.
“We found that social and health challenges faced by mothers of children with FASD place them at increased risk for suicide,” said the study’s lead author Deepa Singal, a PhD candidate in community health sciences at the U of M’s Max Rady College of Medicine, in a statement.
The study, published in CMAJ Open, looked at the anonymous health data over a 34-year period from Manitoba’s Centre for Health Policy. The researchers compared 700 mothers who had children diagnosed with FASD to 2,100 mothers whose children didn’t have FASD.
They found that mothers of children with FASD had higher rates of suicide attempts and deaths;
During the study period, 101 women died, of whom more than 70 per cent were in the FASD group. The most common cause of death in the FASD group intentional was self-poisoning or self-harm.
The study also found that there wasn’t an increase in risk during pregnancy or the first year after the baby is born.
The average time between the birth of the child and suicide was about 12 years, according to the study.
The study also found the mothers had higher rates of poverty, single parenthood, mental disorders and alcohol use.
“Pregnant women don’t drink to intentionally harm the unborn baby. They likely consume alcohol to cope with stressful life circumstances and addiction, or they may not realize they are pregnant,” Singal said in a statement.
Singal said the study highlights the need for mental health support for women who drink during pregnancy and for women whose children are diagnosed with FASD.
“Identifying groups of women who are at risk for suicidal behaviour is crucial for developing effective suicide-prevention strategies,” she said.

http://www.ctvnews.ca/health/increased-suicide-risk-for-moms-of-children-with-fetal-alcohol-syndrome-study-finds-1.3561278 

“The FASD ELMO Network is inviting the public out to an upcoming open house at the Thames Valley District School Board Education Centre…” Sept. 8

http://www.heartfm.ca/news/local-news/shining-a-light-on-fetal-alcohol-spectrum-disorder/
104.7 HeartFM
[Woodstock, Ontario]

Shining a Light on Fetal Alcohol Spectrum Disorder
News Home
Monday, August 28th, 2017 4:09am
A upcoming open house at the Thames Valley District School Board Education Centre is set to shine a light on Fetal Alcohol Spectrum Disorder; also known as FAS-D.

[Photo] logo FASD E.L.M.O. Network

OXFORD COUNTY – The FASD ELMO Network is inviting the public out to an upcoming open house at the Thames Valley District School Board Education Centre.

The event will shine a light on Fetal Alcohol Spectrum Disorder and how it can impact someone’s life.

Co-Chair Craig Read says FASD is preventable, as long as mothers don’t consume alcohol while they are pregnant.

“There is no safe time, no safe amount and no safe kind of alcohol to drink while considering pregnancy or if you think you are pregnant because it will affect the fetus and infants brain.”

FASD is a neurological disorder that can impact the child’s judgement and adaptability throughout their life. In some cases it can also impact the child’s facial features.

Read tells Heart FM FASD can be hard to diagnose.

“There are a lot of individuals that are affected, most of whom are not clinically diagnosed because it’s so difficult to get diagnoses. Most individuals are misdiagnosed six to nine times with other impairments before they might finally get a diagnosis.”
Studies say FASD impact one in four students today.

The open house will take place between noon and 1:30pm on Friday September 8th.

The FASD ELMO Network serves Elgin, London, Middlesex and Oxford and you can find more information on their   website.   http://www.fasd-elmo.ca/

“…a new campaign by Holland Bloorview Kids Rehabilitation Hospital in Toronto, called ‘Dear Everybody,’ aimed at ending stigma experienced by the estimated 400,000 Canadian children and youth with physical or cognitive disabilities and breaking down the barriers that lead to discrimination…”

http://www.ctvnews.ca/health/toronto-hospital-launches-campaign-to-reduce-stigma-of-kids-youth-with-disabilities-1.3564302
CTV news
Health

Toronto hospital launches campaign to reduce stigma of kids, youth with disabilities
Hospital launches anti-stigma campaign
Sheryl Ubelacker, The Canadian Press
Published Monday, August 28, 2017 6:34AM EDT

[Photo] Jadine Baldwin poses for a portrait at Toronto’s Holland Bloorview Kids Rehabilitation Hospital on Wednesday, August 23, 2017. (Chris Young / THE CANADIAN PRESS)

TORONTO – Like any typical teen, Jadine Baldwin loves spending time on her cellphone and laptop, the latter the vehicle for honing her skills as a wordsmith to fulfil her dream of some day becoming a novelist.

But what sets the 17-year-old apart from most of her adolescent peers is her physical disability, the result of being born with cerebral palsy.

And while she has no intention of letting that stop her from reaching her goal, she continually bumps up against the barrier of discrimination – the stares, the whispers and the social exclusion by those seemingly unable to see past her inability to walk or her somewhat laboured speech.

“I think people discriminate against me in the way that they see my wheelchair and not who I am as a person,” said Jadine.

“They’ll talk to other people about me, but not directly to me. So people will stop my mom in the grocery store and ask her what my problem is … because they think that because my legs don’t work I’m stupid and can’t understand them.

“Then my mom’s always like, ‘Why don’t you ask her?’ And then as soon as I start talking, you see the look on their faces. It’s like they’re shocked. They don’t know what to do because they think I don’t have a brain.”

Jadine is part of a new campaign by Holland Bloorview Kids Rehabilitation Hospital in Toronto, called “Dear Everybody,”  http://deareverybody.hollandbloorview.ca/

aimed at ending stigma experienced by the estimated 400,000 Canadian children and youth with physical or cognitive disabilities and breaking down the barriers that lead to discrimination.

“It’s a campaign that’s not only designed to change hearts and minds, but also to inspire action, to get people to think differently about the lives of people with disabilities,” said Julia Hanigsberg, president and CEO of Holland Bloorview.

The campaign includes TV and radio ads, as well as a website – www.DearEverybody.ca – that features an open letter written by kids and young adults with disabilities that answers questions and brings Canadians “face to face with their own biases.”

The website provides information and resources, including recommendations for teachers, employers and health-care providers, intended to end the stigma that can severely affect these young people’s lives.

Hanigsberg said youth with disabilities are less likely to pursue post-secondary education, are vastly underemployed compared to their typically developing friends, and have fewer opportunities for social inclusion.

“One of the most startling statistics that I have ever heard is that more 50 per cent of young people with disabilities have zero or one friend.

“Young people who are intelligent and dynamic and have a ton to say tell me that they’re spending every day at the school cafeteria sitting by themselves because no one wants to sit next to them.

“That’s the day-to-day life impact of stigma.”

Maddy Hearne knows all too well what it feels like to be unable to keep up with her friends and classmates after suffering six concussions over the last four years, half of them occurring while the diminutive teen was taking dance classes.

The traumatic injury requires resting the brain as much as possible to help it heal, in part by reducing exposure to stimuli like loud noise and bright light.

“I had to wear headphones and sunglasses, and because of that people stared at me and they saw I had a bunch of accommodations (from the school) and they’re like ‘She’s crazy. Like I don’t want to be a part of that.”‘

At lunchtime, she was put in a quiet room as prescribed by her doctor. “No one else was allowed in the room. I couldn’t eat in the room, I just had to sit there,” Maddy explained.

“The room was a glass room and I always call it the goldfish room, the goldfish aquarium, because everybody would stare at me. I felt like a zoo animal.

“I’d sit there and watch my friends go by.”

The Toronto teen said she’s lost a lot of friends as a result of her concussions, which cause symptoms like fatigue that don’t allow her to be as active as she once was. She previously spent dozens of hours a week practising and performing ballet and other forms of dance.

Maddy said some friends don’t understand that she has good days when she functions well and bad days when she doesn’t – and that’s just the nature of concussion.

“They only want to see you when you’re 100 per cent and at your best,” she said. “So they’re like ‘I don’t want to hang out with Maddy because she can’t do this stuff.’

“It’s a very hard, unhappy feeling. A lonely feeling.”

Maddy, who is also taking part in Holland Bloorview’s anti-discrimination campaign, believes it will help educate Canadians, providing them with the “right information” about disabilities due to congenital birth defects, disease or accidental trauma.

“I think this campaign is going to help kids who are disabled and kids who do have injuries to feel more comfortable and that society shouldn’t look down on them.”

For Jadine, education comes naturally: “I take the time to sit people down a lot and explain to them my disability. It’s better that I explain it to them than them making assumptions about me that are not true.”

The Georgetown, Ont., teen knows the pain of feeling like a pariah – sitting alone at lunch at school and hearing people talking about her behind her back.

“And some people have literally asked me why I’m even here because as they say I’m such a waste of space and I’m an alien and shouldn’t be here.

“I’m no less of a person than anybody else,” countered Jadine. “We as individuals with disabilities can do and be anything we want to be.

“We have passion and drive and we’re willing to reach our full potential, despite what anybody else thinks about us.”

Calling all those living in Ontario, Let’s get ready to ROCK in London, Ontario. No matter where you are from in Ontario (or even further if you would like to join us), make the drive and come join us as we have a great event planned. Gather your support groups and let’s make this event one of the biggest FASD events in Ontario yet! We can do this…we have to do this..NOW is the time to get on our RED SHOES and ROCK our province! Register today!

 

For more Information please see below! Join the facebook group to stay up to date. Would LOVE to see some representatives from FASD Ontario attend.

 

https://www.eventbrite.ca/e/red-shoes-rock-london-ontario-sept-9-2017-tickets-36112706076

https://www.facebook.com/groups/REDSHOESLONDONONTARIOEVENT/

Application Deadline: October 13th, 2017

Award recipient will be notified by December 15th, 2017

The CanFASD Sterling Clarren Research Award has been named in honour of Dr. Sterling Clarren to recognize his pioneering contribution and leadership in the field of Fetal Alcohol Spectrum Disorder (FASD). The award is presented annually to a Canadian Early Career Researcher or student in recognition of a completed study that has made a substantial contribution to the FASD field.

Preference will be given to work conducted in one of Canada FASD Research Network’s (CanFASD) member provinces/territories (BC, Alberta, Saskatchewan, Manitoba, New Brunswick, NWT, Nunavut and Yukon). However, Canadian researchers conducting work in other jurisdictions may also apply.

Projects must also include a knowledge translation component. Applications may be submitted by:

– A student working in the field of FASD near the completion of their studies, or

– An early career investigator (within 5 years of first Faculty appointment) The study must be intended to integrate research, policy, and practice to improve the lives of individuals with FASD, their families, and communities through advanced knowledge and/or training. This could include intervention, prevention, diagnostics, epidemiology, policy, justice, or basic biomedical research.

The following criteria will be considered in the review of all Research Award applications:

• Relevance and scientific merit of the research project to addressing human dimensions of FASD;

• Potential to inspire future research and attract additional funding support;

• Publication activity of the applicant;

• Other research activities of the applicant; and

• Demonstrated commitment to improving the lives of those affected by FASD.

The 2018 Award recipient will be required to participate at the 8th International Research Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder (FASD) in Vancouver, BC (http://interprofessional.ubc.ca/initiatives/adults2018/). The recipient will be recognized at the conference in the plenary session and will be provided the opportunity to present their research in a concurrent session. Travel expenses and conference registration will be part of the Award, and the recipient will also be awarded a $2000 cash prize. As a condition of the award, recipients will also be required to submit a short plain language summary of their research findings suitable for a lay audience to be posted on the CanFASD website.

To download the application, please visit: http://canfasd.ca/researchers/grants-and-awards/fasdresearch-award/

Clarren Research Award Call for Applications 2018