“Not Without Us: Sam Avery and Mental Health Peer Connection

NOT WITHOUT US (by Mental Health Peer Connection + Sam Avery) is a film deconstructing the complex issues at the heart of one of the most harmful and prevalent forms of discrimination in America – the chronic abuse and stigmatization of people labeled mentally ill. Watch what happens when this group of people, often portrayed as a problem to be solved by society, bands together to stand up for their rights by redefining the nature of the problem and reclaiming their status as integral members of society.

MENTAL HEALTH PEER CONNECTION is part of the WNY Independent Living family of agencies. It exists to empower people with mental illness to take charge of their life and overcome the stigma and obstacles society places in their way. More information:mhpcwny.org.

SAM AVERY is a documentary filmmaker based in the WNY region who works as Program Director for the Digital Media Academy at Harvard University and teaches Digital Video Production and Documentary Film at the University at Buffalo. Most recently, Mr. Avery’s work with documentary film placed him in South Africa and Swaziland, working in collaboration with a University film student and Burundian refugee to explore the complex relationship between filmmaker and subject.

Here is what a Local Physician at Palm Spring has to say about Recent CDC’s Message

This month the Center for Disease Control and Prevention came out with new recommendations telling women of childbearing age that unless they’re using birth control, they shouldn’t drink. Essentially the CDC is saying that if you’re planning to get pregnant or not taking steps to prevent a pregnancy you should completely abstain from alcohol.

The CDC’s message caught some fire online for its blanket call to abstain from drinking alcohol if you’re sexually active and not on birth control, but it also reignited questions about safe amounts of drinking, unplanned pregnancies (about 50 percent of pregnancies in the US are) and the serious risk any use of alcohol can have on a fetus.

The Desert Sun spoke to Dr. Ralph Steiger, a physician at Desert Regional Medical Center in Palm Springs who works with high-risk pregnancies, about what women should know


Dr. Ralph Steiger talks about the new recommendations for the CDC that women who could get pregnant should not drink alcohol, at Desert Regional Medical Center on Wednesday, Feb. 3, 2016. (Photo: Lucas Esposito/The Desert Sun)

How significant are these new recommendations from the CDC?

There are different components to the recommendations. The one that you’re hearing the most about is that women shouldn’t drink at all during pregnancy. That’s old. I was surprised when I heard this (is) why there’s being so much attention focused on it.

The CDC is actually taking a little different tactic to that. We’ve pretty much, in the past, kind of discounted the early exposures to alcohol before women knew they were pregnant. Now there’s increasing concern about that.

The original term of fetal alcohol syndrome, which was published some 30 year ago, was really documented in women who were alcoholics. They consumed large amounts of alcohol every day through the pregnancy. And those babies had problems. They had facial defects and they were significantly mentally delayed.

Now they’re opening the spectrum a bit to a new term of fetal alcohol spectrum disorders, which includes some things that are not necessarily as serious and for which they think lesser degrees of exposure put the babies at risk.

Because of that, they’re becoming concerned about exposure in the first trimester and they are doing this to try to encourage women to do things to avoid even that, such as if you do drink and you’re not using contraception you’re at risk for an alcohol-exposed pregnancy.

Most women don’t find out they’re pregnant until after about the fourth week. What affects can alcohol have on a fetus in those earliest weeks?

We are concerned primarily with the development of the brain with fetal alcohol syndrome. The brain is vulnerable throughout that entire period of time. But also the heart is affected. The heart is not particularly vulnerable to teratogens [something that can cause a birth defect] after about eight weeks. We generally think it’s completely formed by that point.

Click here for the rest of the article

Source: http://www.desertsun.com/story/news/health/2016/02/08/cdc-pregnancy-fetal-alcohol-syndrome/79725740/

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

I was diagnosed with FASD at 34

I was diagnosed with FASD at 34 and vowed to help others facing the same challenge.  This is the beginning of my journey to provide education and hope to others suffering from this invisible disability says Rebecca Tillaou who was adopted as an infant.

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When I received my diagnosis of Fetal Alcohol Syndrome in November 2014 at the age of 34, I made a decision that I would use my diagnosis to help others in any way I could.

Because my mom and I had already pretty confident I had it, I had started researching FASD before I was even diagnosed. During my research I had discovered the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) website. It contained a wealth of information. Signs, symptoms, how to get diagnosed, what to do after your diagnosis, videos and articles about those who have been diagnosed and their struggles and successes.

After my diagnosis, this site became one of my favorites. I loved to read success stories and to find strategies to use to help me focus. About 3-4 months after my diagnosis, I was perusing the website and saw they were accepting applications for speakers for the November 2015 conference.

Well, I wanted my story out there. I wanted to help others. I am in the minority of those diagnosed as an adult. I am very fortunate to be as successful as I am. I wanted parents, caregivers, teachers, and doctors to know success is possible. The sky is the limit. My foundation for success was a loving, structured, caring family. I always knew what to expect. If I struggled in academics, my parents were there to help me. I wanted others to know what I knew. So, I sent my story to MOFAS.

I received an email reply within a couple days. I remember sitting with my phone and clicking on the email, thinking to myself, “Well, I gave it a shot. My journey is just beginning. I will try for other, more local conferences.” When I read the email stating how incredible my story was and asking if I wanted to join their conference, I started to panic slightly. I REALLY wanted to do this, but I would need money for a plane ticket, a hotel, food, time off work, and a rental car! My FAS brain had not thought about all of that at the time I applied. I was just excited about the prospect of reaching others with my story.

You see, many brains affected by FAS live in the moment, and don’t always think about ALL the factors that need to be considered in planning a trip. My brain and I do things backwards many times. I see what I want, I decide I will do it, and money and time are the last things I think about.

I went home that night from work and told my husband about the opportunity. At this point, he has started to realize my brain works backwards sometimes, which can cause stress between us. He asked if there was any way the organization could cover some of my travel expenses. Hmm, I hadn’t thought of that—big surprise. I emailed the contact person and told her I was a lady with two little guys in daycare and money was tight. She wrote back stating they would pay for my hotel, they would get me a shuttle to and from the airport, they would cover the conference fee, and all I needed to pay for was my flight. Life lesson finally learned by me: You never know unless you ask.

I went back to my husband to tell him the news. The airfare would be a little pricey, but he knew this was the start of my education journey, both for me and for others. He said we would make it work. I was so excited to tell my story! So now I had just six months to write my speech, board that plane, and start changing lives.

To be continued . . .

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Rebecca Tillou

Rebecca was adopted as an infant through Bethany Christian Services. She found her birth family in May of 2013, and continues to keep in touch with them. Sadly, her birth passed away in 1999. She and her husband live in New York and are the parents of two beautiful little boys, Dominic and Nicolas. They also have a German Shepherd mix named Chester. She was recently diagnosed with FASD at 34 years of age. She is currently working with nofas.org and thearg.org to get the word out that there is hope, and that you are never too old to better yourself.

Source: http://adoption.com/an-invisible-disability-fasd

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

February 2016 – EFAN Monthly Meeting Minutes

February 2016 Minutes

Please click on the links below to download minutes for supports & services and Society meeting

February 2016- Supports and Services Minutes

February 2016- Society Meeting Minutes

You can also download these and previous minutes


Sip on this: Like all drugs, alcohol isn’t consequence-free

The Prevention Conversation: A Shared Responsibility Project

The Globe and Mail

Published Monday, Feb. 08, 2016

You can say this about Canadians: We like our beer. And wine, spirits and coolers.

The average Canadian buys almost 76 litres of beer, 16 litres of wine, five litres of spirits and four litres of other alcohol-based drinks annually.

Alcohol is an accepted part of everyday life, a social lubricant at weddings, birthdays, parties, and a staple of sporting and cultural events, as well as meals.

But there’s a dark side to the $20.5-billion we spend annually on drink.

Alcohol kills and maims in a perversely diverse number of ways: liver disease, fetal alcohol spectrum disorder, impaired driving; it fuels violence, sexual assault, suicide, traumatic injuries and hikes the risks of cancer and heart disease. All told, alcohol negatively affects more than 200 health conditions.

The impact of alcohol…

View original post 600 more words

Is It OK to Drink Alcohol While Pregnant? 10 Things You Should Know

On Feb. 1, the CDC released new guidelines urging women of childbearing age to avoid drinking alcohol unless they are using contraception. This new guideline is designed to prevent fetal alcohol spectrum disorders (FASD), which are caused by a fetus being exposed to alcohol in utero. FASD is a 100 percent preventable condition.

According to the CDC, more than 3.3 million U.S. women are at risk of exposing a developing fetus to alcohol because they drink, are sexually active, and don’t use birth control and are therefore at risk for an unplanned pregnancy. Furthermore, three in four women who would like to get pregnant as soon as possible report drinking.


Image: Jocelyn Runice for SELF

“Alcohol can permanently harm a developing baby before a woman knows she is pregnant,” Anne Schuchat, the principal deputy director of the CDC, said in a statement. “About half of all pregnancies in the United States are unplanned, and even if planned, most women won’t know they are pregnant for the first month or so, when they might still be drinking. The risk is real. Why take the chance?”

This recommendation is the latest of many moves to educate women about FASD. For instance, all alcohol bottles are labeled with a government warning about drinking during pregnancy, which was made mandatory by the Alcoholic Beverage Labeling Act (ABLA) was passed in 1988.

In the 1980s, physicians who had once advised pregnant women that they should have a couple of drinks to relax, or prescribed alcohol drips to stave off preterm labor, were realizing that exposure to alcohol could be extremely harmful to fetuses in utero. Alcohol is a neurotoxin that can be freely passed from the mother to a fetus through the placenta, harming development and in cases causing structural abnormalities in the brain.

Kathy Mitchell, a young mom who binge drank while pregnant with her second daughter in the ’70s, recently shared her story with SELF. Her daughter Karlie has severe FASD and at age 43 has the intellectual capacity of a first-grader. Mitchell simply did not know that alcohol could be harmful to a fetus, and stresses the importance of educating women, their partners, and their doctors about the risks.

There are many myths and misconceptions surrounding alcohol use during pregnancy. SELF spoke to the experts, and they answered some common questions for us. Here’s what they had to say.

Click here for the list of reasons NOT to drink while pregnant.


Source: http://www.huffingtonpost.com/self/is-it-ok-to-drink-alcohol-while-pregnant-10-things-you-should-know_b_9153818.html

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.




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