NOFAS Affiliate Spotlight: Ukraine Works Ltd

This article was written by Anne Linden, Director of Ukraine Works Ltd.

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“What I need is information about fetal alcohol,” Stephen Severylov, then Director of the Mykolychin Internat, a boarding school for children with special needs, told me in late September 2007. I had no idea what he was talking about and as it turned out, neither did he.

In July, heavy rains had flooded much of the region, wiping out a 200-year-old bridge in Kosiv, briefly turning Ivano-Frankivsk the region’s capital into an island and devastating the Mykolychin Internat. Stephen was still struggling desperately to reopen the school and as he explained had “ten minutes to talk with me.” By then Stephen and I had been working together for two years. Most recently, I’d raised money to purchase equipment for a small gym and a karaoke with two microphones.

I’d served as a Peace Corps volunteer in the region from 1992-1995 and had returned regularly, sometimes spending months at a time. Tackling projects for which I had no training had become my norm. Not being able to help Stephen never crossed my mind; neither did the difficulty of the project I had agreed to tackle. Once back in the States, I sought advice from now Assistant Professor of Physics Lyuba Titova (a high school student in Ivano-Frankivsk when I first met her). She suggested we begin by translating Edmonton and Area Fetal Alcohol Network’s FASD Strategies Not Solutions into Ukrainian.

This lead to our translating Alberta Learning’s Teaching Students with FASD: Building Strengths, Creating Hope and to my contact with Deb Evensen. I needed permission to include material she’d written that was footnoted in the Alberta Learning article. This led to my meeting Kathy Mitchell at the annual FASD conference in Vancouver and ultimately to my meeting Jodee Kulp and Diane Malbin both of whom lovingly permitted us at no charge to translate into Ukrainian and locally distribute their books: The Best I Can Be and Trying Differently Rather than Harder. My having lunch with Drs. Tina Chambers and Ed Riley in San Diego led to our partnering with OMNI Net and our work with Neonatologist Lyuba Yevtushok in Rivne, Ukraine. My attending a EUFASD conference in Barcelona led to Susan Fleisher’s loving offer to let us translate into Ukrainian the NOFAS-UK video A Child for Life at no charge.

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Five years ago, I was joined by Oxcana Boichuk, the Ukrainian volunteer without whose help most of what we’ve accomplished would have been impossible, and her sister Nadvirna based Neonatologist Natalia Kartenko. Together they organized a conference for 25 neonatologists from the Ivano-Frankivsk region that included doctors and professors from the local medical university. This gave Oxcana the opportunity to show The Child for Life video and Natalia the opportunity to share information she’d received from Doctors Ken Warren and Tina Chambers during a recent OMNI-Net training session. OMNI-Net had invited us to send three or four neonatologists to one session and three or four educators to another.

There is another key player in this saga, my son, Marc Linden, without whose financial support none of our work would have been possible. I understand how important it has been for me, as a retiree, to have challenging work; it has kept me mentally active and given me an opportunity to contribute to the betterment of society at a time when so many of my peers lack this freedom. To say that I am truly grateful is an understatement.

A Child for Life

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Although I felt a video would be a good way to introduce Ukrainians to the potential consequences of drinking when pregnant, I left the video selection up to a Ukrainian, Maria Hnatkovsky, a friend, fluent English speaker and member of our board. Kathy Mitchell’s heart wrenching contribution made her choice easy.

The prevention of fetal alcohol spectrum disorders through education has been and remains our primary goal. As we’ve discovered, telling Ukrainian women not to drink when pregnant is and has been standard, but why not has never been mentioned even in medical schools. Further complicating our problem: Ukrainians drink to celebrate making binge drinking the norm. We saw the need to find people experienced in dealing with FASD who are able to explain clearly and simply why during pregnancy it’s so important not to drink. This is precisely what the video A Child for Life does so well.

Once Maria had selected the video, I had it transcribed here in the States, made corrections and sent the script to our regular translator who translated it into Ukrainian. Maria’s stepson added the subtitles and when they proved too long even for good readers, Maria’s husband and a friend did the voice over.

SHOCK has been everyone’s response. Our first audience was a Lviv State University advanced English class. Transfixed from beginning to end, they left the classroom speechless. We’ve since shown the video to high school, college and university students, to members of Kolomiya’s Girls’ Club; on TV in Kolomiya and as part of a round table discussion in Rivne; to teens and parents in Dnepropetrovsk, to health ed classes in Volyn. We’ve shown it in summer camps, churches, at parents meetings, to instructors at a rehabilitation center for children with physical disabilities, to close to 100 people at Kolomiya’s City Hall, including police, court officials, teachers, psychologists, social workers, and the head doctor from Kolomiya’s Children’s Hospital.

The head doctor came up to me afterward. “It’s critical,” he said, “that FAS be prevented.” Unfortunately, not a single woman with an FASD child has so far admitted to having consumed alcohol while pregnant.

Our Goals

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Forming a Ukrainian counterpart to Ukraine Works Ltd is our top priority. Without it, fund raising locally is impossible as is involving the Ukrainian government. Both are needed if we are to grow or even survive.

We know that the incidence of FASD in greatest in rural areas. Many rural families make their own vodka. Unfortunately, without greater resources with which to hire staff, we are unable to reach out to these communities.

We have no paid staff and doing volunteer work is not part of the culture. However we have had people express interest in working with us so figuring out precisely what they can do is also a priority.

We plan to survey again – to determine where we are succeeding in getting our message out, where not, and how we can improve.

For the past eight years, we’ve been the only organization in Ukraine dedicated to preventing Fetal Alcohol Spectrum Disorders. It’s time for others to become involved.