Red Shoes Rock: Start the Conversation About FASD!

In their hopes to make Edmonton and the surrounding area the most ‘FASD Friendly’ place in Canada, the  Edmonton and area Fetal Alcohol Network is hosting their Red Shoes Rock: Start the FASD Conversation challenge (open to anyone anywhere). But we think, working together, we can make Alberta the most ‘FASD Friendly’ province in this country. Let’s all join the conversation and rock some red shoes as we educate and inform all of our communities about FASD, its prevention, and how we can help to support children, youth, adults, caregivers, and communities whose lives are impacted by Fetal Alcohol Spectrum Disorder. Please see below for more information!Screen Shot 2018-05-24 at 2.32.14 PM

Why Rock in Red?

There are tens of thousands of people and their families living with FASD who:

  • Need friends and understanding.
  • Need support to live safely in our communities.
  • Need to participate in life and have a purpose.

The color RED often signifies life!

  • Red signals stop and take immediate action.
  • Red is a warm, strong and positive color.
  • Red is energizing and stands out.

Red excites emotions and motivates us to take action!

Red Shoes? Where did this all start?

Now, that is a good question!

With RJ Formanek, founder of the very successful Facebook support group for adults with FASD called Flying with Broken Wings. 

RJ Formanek is an adult with FASD and he decided to wear RED SHOES to stand out, be noticed and have some fun starting the FASD conversation with strangers in 2013. Back then it was all about:

  1. Turning invisibility into visibility
  2. Creating conversation
  3. Changing stigma into understanding and acceptance

In 2014, Jodee Kulp, from Better Endings New Beginnings, a graphic designer and parent of an adult with FASD stepped in to help him build visibility and get the word out – she has continued to be the Little Engine That Could behind this grassroots all-volunteer movement. The goal was to build awareness and momentum to celebrate FASDay. We hoped Red Shoes would help more people notice International FASDay on September 9.

The Logos

You are free to mix and match any of their logo artwork to fit your local campaign. Please email jodeekulp@gmail.com if you need original artwork.

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Red-Shoes-High-Tops

 

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RedShoe-DecalLimited $$$ for RED SHOES? – Red Flip Flops, Red Socks, Red Shoelaces and Red Toenails all qualify. Or simply join us to participate in the FUN and the FASD conversation!

Source: Prevention Conversation

DRY9 Mocktail Contest

 

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Every day, challenges exist for those who make a choice to remain alcohol-free. One alternative for those wanting to enjoy some drinks while out with friends is mocktails. Whether you’re a mom-to-be, breastfeeding mom, supporter or a non-drinker we want to invite you to submit your favourite mocktail recipe for a chance to win an awesome prize and bragging rights. Your submissions can be anything from classic recipes or your own inventions. Help us create the best collection of virgin drinks for all the Dry9ers.

Submit your non-alcoholic drink recipe by April 30th, 2018 for a chance to win a Dry9 Prize Package including having your recipe featured on our DrinkSense Mocktails page.

TO ENTER: Submit your recipe using the contest form by 11:59pm on April 30th, 2018.
Official contest rules can be read here.

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Want to Predict a Child’s Future Health, First Measure Their Stress, Says Researcher

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CBC News

We’ve all been told that stress is harmful to our health. But new evidence suggests that children who suffer stressful or traumatic events could suffer life-long consequences.

The events are known as adverse childhood experiences (ACEs), which range from parental separation to sexual abuse. Researchers have discovered that they’re clear indictors of a child’s future health outcomes.

The culprit is the stress hormone cortisol, which is toxic to a child, said Jennifer Mervyn, a psychologist and ACE consultant.

“The impact on the brain is significant,” Mervyn said during an interview on CBC’s The Early Edition.

One study found that a male child with an ACE score of six is 4,600 per cent more likely to become an injection drug user versus a male child who has an ACE score of zero.

The findings were presented this week in Surrey’s health and technology district, which hosted a week-long event on advancements in brain research.

Listen to the full interview below. 

//www.cbc.ca/i/caffeine/syndicate/?mediaId=1185912899658

Brains ‘want to change’

Researchers have discovered that cortisol can have a structural impact on a child’s brain, Mervyn said.

Children who accumulate trauma tend to develop a larger amygdala, which is the brain’s emotional response centre.

The good news, Mervyn said, is that children’s brains are malleable, meaning that damage inflicted by stress and trauma can be offset as a child matures into puberty.

“[Brains] want to change, they want to heal,” she said. “The capacity to do so when you’re young is incredible.”

Treatments for kids can be found through various therapies and caring relationships with adults, Mervyn said.

Parents, too, can learn techniques that help them cope with their own stress and support and nurture their child.

“It really comes down to creating an environment where that child has been removed from that toxic stress,” Mervyn said.

Mervyn said the findings also point to the need for greater investment in youth mental health and substance abuse programs.

Retrieved from http://www.cbc.ca/news/canada/british-columbia/kids-stress-brain-health-1.4576187

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Webinar: Population-Based Prevalence of Fetal alcohol Spectrum Disorder in Canada

 

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The Public Health Agency of Canada (PHAC) Fetal Alcohol Spectrum Disorder (FASD) Initiative is pleased to invite you to attend the upcoming webinar, Population-based prevalence of Fetal Alcohol Spectrum Disorder in Canada.

This webinar presentation concludes one of the FASD Initiative’s funded projects, led by Dr. Svetlana Popova, a senior scientist at the Centre for Addiction and Mental Health (CAMH) and an associate professor at the University of Toronto.

Dr. Popova will discuss the methodology and results of her study that led to the first population-based estimates of FASD prevalence among elementary school children in the Greater Toronto Area.  Dr. Popova will also be joined by Dr. Valerie Temple, diagnostic team member, during  the question and answer period.

Join us on March 27, 2018, from 1:00 p.m. to 2:30 p.m. EST to learn more.

Please note that simultaneous interpretation will be provided.

To register, please visit:

http://www.chnet-works.ca/index.php?option=com_rsevents&view=events&layout=show&cid=425%3A&Itemid=6&lang=en

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March 21 FASD Webcast

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Join us for this free webcast entitled: Let’s Get Real: the FASD Prevention Conversation Adolescent Project.

“The FASD Prevention Conversation: A Shared Responsibility,” is a province wide initiative funded by the FASD Cross-Ministry Committee. The project focuses on the power of relationships by fostering brief, non-judgmental conversations to inspire change related to alcohol use during pregnancy.

The FASD Prevention Conversation originally targeted adults and was well received in Alberta communities. The Adolescent Project is bringing the key messaging to young people.

Debbie and Megan will:

  • Provide a brief overview of the intent, content and proposed delivery of “Let’s Get Real” strategies to reach youth and young adults with prevention messaging.
  • Detail new resources available for teachers, youth group leaders, and others who mentor young people and want to provide positive FASD prevention messaging.
  • Explain how local network facilitators can provide mentors with training and materials adaptable to make the program appropriate for a variety of age groups, developmental stages and settings.

This webinar will be of interest to persons directly affected by FASD and anyone else supporting persons with FASD.

AGENDA:
Date: Wednesday, March 21, 2018
Time: 9:00 a.m. – 10:00 a.m. MST
Speakers: Megan Tucker and Debbie Collins
Register Here
Format: Presenters with PowerPoint Presentation
Cost: FREE! Please share with your networks
Q&A: You can pose questions to the speakers through the live chat functionality. Remember, the live webcasts are interactive and we encourage you to participate in the question and answer portions by typing questions for speakers in the chat window, which is located below the main video panel on the webcast page.

SPEAKER BIOS
Debbie Collins currently facilitates “The FASD Prevention Conversation” in the Lakeland Network. She also trains mentors/advocates through The Parent and Child Assistance Program (PCAP). Debbie is a mother and a grandmother of loved ones with FASD and is passionate about prevention.

Megan Tucker is the training coordinator at the Lakeland Centre for FASD as well as a prevention conversation facilitator for the Lakeland Metis Network. Megan has been involved with the Network for almost 10 years.

Previous webcasts are available on the CSS Learning Series Website.

THE FASD LEARNING SERIES:
The FASD Learning Series helps individuals, caregivers, front-line workers and professionals learn more about FASD, and how to support persons with FASD. The educational sessions cover a broad range of topics and are accessible to all Albertans.

Alberta’s FASD 10-Year Strategic Plan outlines the government’s commitment to provide awareness and prevention of FASD, as well as assessment, diagnosis, and support for individuals with FASD and their caregivers. All services and activities are built on a foundation of stakeholder engagement.

Free Webinar January 25th: Alberta Brain Injury Initiative

Register now for the January 25, 2018, Alberta Brain Injury Initiative (ABII) Webcast

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Photo Source: Flood Modeller
Join (ABII) for this free webinar titled Effects of Drugs and Alcohol After Brain Injury.

Continued drug and alcohol use can impact persons who have been affected by a brain injury. In this webinar, a panel of experts will discuss:

  • Neurobiology of substance use disorders
  • The significance between traumatic brain injury and substance use disorders
  • Case examples of approaches used to manage substance use disorders

This webinar will be of interest to caregivers or anyone supporting individuals with brain injury who wish to learn more about these issues.

AGENDA:
Date: Thursday, January 25, 2018
Time: 2:00 p.m. – 3:15 p.m. MST
Register Here
Speakers: Dr. Rajpal Thiara, Dr. Reno Gandhi and Amanda Nickerson
Format: Presenters with PowerPoint Presentation
Cost: FREE! Please share with your networks
Q&A: You can pose questions to the speakers through the live chat functionality

SPEAKER BIOS:
Dr. Raj Thiara is medical lead of the Brain Injury Rehab Program for Edmonton.

Dr. Reno Gandhi is a neuropsychologist and registered psychologist at Glenrose Rehabilitation Hospital.

Amanda Nickerson is a social worker for Alberta Health Services.

FASD How Far We’re Come


This week UBC is hosting the world’s largest FASD research conference. The 7th International Conference on Fetal Alcohol Spectrum Disorder: Research, Results, and Relevance will bring together 200 presenters and 700 delegates for a three-day, multidisciplinary conference. Considering that FASD first showed up in academic literature in the 1970’s, a conference of this size and calibre is a big accomplishment.

Fetal Alcohol Spectrum Disorder (FASD) is a term that most people have heard in passing, but few understand its complexities. You might know that FASD comes from pre-natal alcohol exposure and that it can affect behaviour, but that’s likely where your interest ends.

Why should you be interested in a rare disorder that only affects a select group of people? Because that’s not true. FASD can affect all families, regardless of race, religion, or level of education or wealth – wherever there is a chance of pre-natal alcohol exposure, there is a chance of FASD. It is the most common cause of developmental disability in Canada and has life-long impacts on those diagnosed. It can also place a substantial cost on society, including health care and corrections costs. We know all of this now because of the improvements in FASD research.

The accepted definition of FASD is “a diagnostic term that reflects significant impairment due to prenatal alcohol exposure.” The effects of FASD are extremely varied, but can be physical, mental or behavioural. Common effects include difficulties with social communication, difficulties learning from consequences, and motor and sensory problems. Approximately 90 per cent of people with FASD experience other mental health difficulties.

Improved FASD research means improved lives, and since my time starting in this field, there have been inspiring improvements.

When I became involved in learning about FASD in 1994, there were very few people talking about this disorder and how to prevent it. It was difficult to find articles written on the topic in scientific journals and equally as difficult to get any university interested in community work being done in this field. But last year, in 2016, there were over 400 scientific articles published in North America on FASD.

Again, in 1994, you would be hard pressed to get a diagnosis of FASD in Canada. Rarely could physicians make the diagnosis. And rightly so, because it was not until after continued research that we learned the best method for diagnosis was a multidisciplinary team approach. Today, however, there are around 60 multidisciplinary diagnostic teams in Canada.

Watching FASD research grow for the past twenty years, I’ve seen some of the most cutting-edge research taking place right here in Canada. Canada is a leader in FASD research and has made significant contributions to the international body of scientific knowledge. CanFASD has been at the forefront of this FASD research as a collaborative, interdisciplinary research network with researchers and partners across the nation.

In Canada, we’ve pioneered research that has provided important information to governments about how to effectively develop policy and programs for individuals with FASD, and prevention efforts. Many provinces in Canada have a provincial or territorial plan to address FASD that is informed by research done here.

The new FASD Diagnostic Guidelines, developed by CanFASD in 2015, are an important progressive contribution to international research. The guidelines aim to help standardize the diagnostic process and improve how we diagnose the disorder. The Canadian guidelines are being adopted in countries around the world, like Australia and New Zealand.

Dr. Nancy Poole and her team at the BC Women’s Centre of Excellence developed a four-ponged approach to FASD prevention considerations. This has significantly improved how we address prevention at a national, provincial and community level.

CanFASD has also developed the first countrywide database for collecting information about individuals with FASD at the time of diagnosis or assessment. This will provide important information about individuals with FASD for effective service delivery and future refinements to the diagnostic process.
FASD is a young and exciting field, so there is still a lot to discover. The research can make a big difference in the lives of those with FASD and their support systems.

We have come extremely far from when I first started in this field, but there are still important areas of research that need to be pursued. I could make a long list of areas that need more research: FASD across the lifespan, FASD and aging, needs of caregivers, school and community interventions, sexuality and gender issues, identifying common physical ailments, relationship support, cultural differences and new immigrants, but if the improvements in research over the past twenty years are any indication, we’ll get to all of these areas.

The 7th International Conference on FASD is a huge accomplishment. It shows that researchers from Australia to the Netherlands, from Texas to Spain, from Vancouver to New Brunswick, are learning and sharing about FASD. Less than fifty years after we first began talking about FASD, hundreds of experts spend their academic lives specializing in this area. That is progress.

Wherever there is a chance of pre-natal exposure to alcohol, there is a chance of FASD. FASD is society’s responsibility. As part of the research community, we are proud to contribute to all areas of FASD research – prevention, diagnosis, and treatment. We hope that you’ll look into the research as it becomes more and more accessible, and do your part too.

Audrey McFarlane
Executive Director, Canada’s FASD Research Network (CanFASD)

Retrieved from: http://www.castanet.net/edition/news-story-190302-10-.htm

CanFASD Doing a Study with University of Alberta

Looking at employment successes of adults with FASD.

There are two parts to the study:

  1. A short survey. This can be completed on the phone, online, or on paper.
  2. A video. We will be taking short clips of people talking about their successes at work. This part of the study is optional.

Are you coming to the International Conference on FASD in Vancouver this March? 

CanFASD and he U of A are hoping to find volunteers to complete the study at the conference. They welcome service providers, caregivers, and adults with FASD to visit Dr. Jacqueline Pei or Dr. Katy Flannigan at the CanFASD conference booth for more information. You can also contact Katy (katy.flannigan@canfasd.ca) any time if you have questions before the conference.

FASD Fact Sheet

The first published literature that linked prenatal alcohol use with birth defects was in France, in 1968, by Dr. Paul Lemoine. In 1973, researchers at the University of Washington published their findings regarding a group of children who shared uncommon physical features and developmental delay. These children all had mothers who had consumed alcohol in pregnancy. The term “Fetal Alcohol Syndrome” (FAS) was created to describe the patterns observed in these children.

Today, Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term that describes the range of effects that can occur in an individual who was prenatally exposed to alcohol, and includes FAS. These effects can include lifelong physical, mental, behavioural difficulties, and learning disabilities. Depending on the amount and the timing of alcohol exposure, a minority of infants exposed will also develop a characteristic pattern of facial features, and some will have a growth deficiency. However, those effects are relatively rare and have little impact on day-to-day function.

Decades ago, the facial features of FAS received a lot of attention in the press. The presence or absence of facial features depends on whether alcohol was consumed in a very narrow window of time during pregnancy. It does NOT reflect the degree of brain disorder. The vast majority of people with FASD are not visibly different; you cannot see FASD. Although in a very small percentage of people the face may look different, the important fact is that in all individuals with FASD, the function of the brain is permanently affected.

Alcohol exposure during pregnancy results in changes to the developing brain at neurochemical and structural levels. Often, these changes are not detected until a child reaches early or middle school-age when difficulties at school and at home become increasingly problematic. These challenges can include problems in social communication and attention, motor and sensory problems, memory, and difficulty learning from consequences. As an individual grows, they are also at increased risk for depression, anxiety and other mental health conditions.

Scientific evidence has conclusively shown that alcohol consumption during pregnancy can cause fetal harm. There is insufficient scientific evidence to define any threshold for safe low-level drinking during pregnancy or when planning to become pregnant. The life-long damage to the brain is the most common and serious result from prenatal exposure to alcohol and can occur at any time during a pregnancy. The safest choice for a woman who is pregnant or planning to become pregnant is not to drink alcohol.

A common misconception is that FASD is associated with social, ethnic or cultural background. However, the majority of Canadian women drink alcohol. In a 2004 Canadian Addictions survey, 76.8% of women over 15 years of age reported drinking alcohol within the previous 12-month period. Approximately one half of all pregnancies are unintended. The highest rates of unintended pregnancy occur in women aged 15 – 19 years of age, which is also a population at increased risk for binge drinking.

There are currently no confirmed statistics on the number of people in Canada who have FASD, yet, prenatal alcohol exposure is considered the most common known cause of developmental disability in the western world. Over the years, prevalence rates in the United States have been reported as 1-3 per 1000 live births for the specific diagnosis of FAS, but as high as 1% or even higher for the full spectrum. The latest research on prevalence, conducted in several countries, indicates that these rates are believed to be as high as 5 out of every 100 live births. The indirect and direct costs for supportive needs in health, mental health, social services, and education and negative costs through criminality and criminal justice are estimated to be $4B/year.

Unlike most other birth defects, the diagnosis of FASD is not straightforward. Medical signs are difficult to recognize in newborns, infants and young children. Diagnosis can be delayed or missed entirely, as most of the damage caused by alcohol use during pregnancy cannot be easily quantified until problems arise. Problems caused by prenatal alcohol exposure may not be noticed until children are in school or until the teenage years because this is when those affected by FASD often have significant difficulty meeting societal expectations. FASD is challenging to detect and the diagnostic process relies on an inter-disciplinary team approach. Diagnostic services are not widely available across Canada, especially in rural and remote areas. Many families are reluctant to seek a confirmed diagnosis due to the stigma of addiction.

No two people with FASD will have the same challenges due to the wide variation of alcohol effects on brain development. They are at increased risk for mental health issues, school difficulty, addictions, and difficulties maintaining employment. Some of the more commonly seen challenges include:

  • Executive functioning – difficulty with judging, planning, delaying gratification, consequences, organization, impulsivity, memory
  • Communication – can be highly verbal, but lack comprehension skills both written
    and verbal
  • Neuromotor Defects – impaired balance and coordination
  • Sensory Deficits – pain, touch, heat, light

If the above are not appropriately understood and addressed, individuals with FASD are at increased risk for early school failure, involvement with the law, family disruption and homelessness.

Our understanding of FASD is in a period of rapid expansion and change. We are beginning to understand the extent of the global impact of this lifelong disability. Research, and the answers it may provide, is critical for moving this field forward, changing the way we view this brain based disability and lessening its impact on individuals, families and society.

For the complete article, follow this link.

Real Stories from People living with Fetal Alcohol Spectrum Disorders

Melissa’s Story

This is the story of Melissa’s experience with alcohol use during pregnancy and her journey to find the best possible care for her son.

Melissa

“I drank at the beginning of my pregnancy; before I found out I was pregnant. My doctor told me that it was okay to continue to drink wine during pregnancy. He said I could have a glass of wine at night with dinner. He said it might even help me relax and improve circulation. Not only did I think drinking wine during pregnancy was okay, but I thought that it could be healthy. He never asked me if I had a drinking problem, or how many drinks I have a day, or if I binge drink. There wasn’t any dialogue. I really wish that my doctor would have had more dialogue or asked me questions about drinking alcohol during pregnancy.

“When my son was born he looked perfect. He has amazing strengths. He’s brilliant and he’s an amazing musician. However, as he got older I realized that things just weren’t quite right. He doesn’t like how clothes feel. He wore the same outfit for almost a year. I finally found a pair of socks that he would wear. Then the company stopped making the sock. That wouldn’t be a big deal for most people, but it was a terrifying moment for me. We went through about 25 packages of socks before we found a new brand that he would wear.

“On his first day of kindergarten, the school called me because he had turned over all of the chairs that people weren’t sitting in, turned over items in the kitchen area in the classroom, and thrown his shoes at the teacher.

“Most kids will get mad when they have to end play dates or sleepovers. But instead of just getting mad, my son tried to jump out of the car the other day because he had to leave a sleepover.

“When I finally realized what was going on, it was a relief, and it was horrifying, and I felt guilty, and I felt ashamed. But mostly I felt relieved to know what was going on.

“If a pregnant woman said to me, ‘I drink a little bit here and there and I was told it was okay,’ I would tell her that she wouldn’t if she had to live just one day with the way that I feel about myself, knowing how my son has been affected by my choices.

“I am angry that I was given wrong information about drinking during pregnancy. I want to tell as many people as I can about it. You never know how much alcohol during pregnancy is too much, so why take that chance?”

CDC would like to give a special thanks to Melissa and the National Organization on Fetal Alcohol Syndrome (NOFAS) for sharing this story with us.

Watch Melissa’s full story on video

For the full article follow this link.