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Posts Tagged ‘Dana Marnane’

Autism Speaks Being Heard in Europe

November 2, 2011 4 comments

Autism Speaks staffers meet with members of the Dutch autism research community, Nederlandse Vereniging voor Autisme and the Health Council of the Netherlands

Posted by Autism Speaks staffers Simon Wallace, Ph.D., director of scientific development for Europe; Dana Marnane, vice president of awareness and events; and Daniel Lightfoot, Ph.D., director of the Autism Tissue Program  

Over the last week, we visited three European countries to explore partnerships with researchers and autism organizations. In particular we’ve been discussing Autism Speaks’ efforts in the areas of awareness, communication, our Global Autism Public Health (GAPH) initiative and the Autism Tissue Program (ATP).

Pulling our suitcases behind us, our first stop was in Stockholm, Sweden, where we met with Prof. Sven Bölte, of the Karolinska Institute for Neurodevelopmental Disorders, to discuss establishing an autism brain bank in Sweden.

As highlighted in a recent Nature article, one of the best ways for scientists to understand how autism affects brain development is by looking directly at the tissue. Just as diabetes researchers must study the pancreas, scientists studying developmental neurological conditions such as autism must study brain tissue.  Already, research has revealed altered cell organization in brains affected by autism. This research can continue and progress only by increasing donations of this precious resource.  Autism Speaks is working with its partnering brain bank in the UK to expand collections into other European countries.

From Sweden, we traveled to London and shifted our focus from scientific research to autism awareness. In recent years, Autism Speaks has led global awareness efforts through initiatives such as our Ad Council campaigns, World Autism Awareness Day, GAPH and Light it up Blue. The measurable success of these efforts has led to expanded partnerships with European organizations. During our London visit, this crystallized in a meeting with European parent organizations and other autism advocates.

Present at the meeting were representatives of Autism Europe (which includes over 80 member associations), Autistica, Autism France, the Celtic Nations Autism Partnership, London’s Centre for Research in Autism and Education, the Hungarian Autism Society and Irish Autism Action. We spent the day learning about each other’s campaigns and brainstorming ways to increase global autism awareness. Everyone was familiar with our Light it Up Blue initiative and were actively planning their increased participation in the year ahead. The overall feeling was that, together, we can accomplish so much more. We will continue exploring this fruitful partnership in the months ahead.

Next it was a short hop to Utrecht, in the Netherlands, at the invitation of Nederlandse Vereniging voor Autisme (NVA), the country’s national autism organization. Its staff and members were eager to learn more about GAPH and our international awareness initiatives. Our team also took this opportunity to explore the development of a brain tissue bank in the Netherlands, to match our efforts in the UK and Sweden.

A highlight from this visit was the Netherlands National Autism meeting, the first national meeting of Dutch autism families and their research community. As special guests, we heard about Dutch research examining the relationship between genes and behavior, autism prevalence, nutrition, the elderly and autism, enabling technology and an intervention for young people with autism to help them understand sexuality. Over the next few weeks we will be inviting some of these researchers to describe their studies on our science blog.

There is much we can learn by working together with our European partners, and our visit was an important step in forging closer collaborations involving science and awareness. Goodbye for now; hejdå and dag to our Swedish and Dutch friends!

 

History Being Made – Autism Conference, Doha, Qatar

By Dana Marnane, Vice President, Awareness and Events, Autism Speaks

I was thrilled to have been asked to participate in an autism conference this past weekend in Doha. Qatar. This wasn’t my first trip to Doha – I visited two years ago following the 2008 launch of our partnership with the Shafallah Center for Children with Special Needs. I worked with the team there on the launch of their awareness program as well as presented with my colleague Sheila to families about how to advocate for their child. That was an exciting trip and I felt I was really helping, but it was nothing compared to this visit.

The result of four years of work in the region, this conference brought together three gulf region countries to determine if they were ready to collaborate. They were!  The Shafallah Medical Genetics Center , which is a part of the whole Shafallah Center, and the director, Hatem El Shanti, M.D., played host for the event. Invited were the leaders of autism research organizations in Saudi Arabia and Oman and their teams. Mohammed Al Dosari, M.D., founder and general director of the Faisal Autism House led the Saudi team and Yahya Al Farsi, MD, assistant dean of Sultan Qaboos University led the Omani contingency. Despite their differences in culture, resources and facilities, these three groups met openly to discuss collaboration in the areas of diagnosis, epidemiology, genetics and treatment. With the assistance of Autism Speaks own Andy Shih, Ph.D. and Michael Rosanoff, M.P.H., Eric Fombonne, M.D. and Joachim Hallmayer, M.D. they created working committees to address all these core issues.

Now why was this such a big, historical event? One reason is that very little research has been conducted in the gulf region – they have autism, just like every other country – but no data and answers to inform and galvanize the community. United, they will move faster and more efficiently to determine the causes, ascertain better treatments and move the whole world closer to the causes of autism. Many countries in the gulf region have consanguineous marriages – they will explore this among many other causes including environment to determine if any are potential factors in autism. They are translating and adapting diagnostic tools and early intervention methods, like the Early Start Denver Model which has shown great success in the U.S. These tools will enable earlier diagnoses, better treatments and improved outcome and also will validate our own tools, perhaps leading to even better ones. Their research will help to inform research in the U.S. and beyond. This was truly an amazing meeting and I am looking forward to collaborating with all three countries on raising awareness around their efforts to lessen the stigma that still exists there and to help accelerate their efforts. Stay tuned!!

See two articles that were published in Doha on the event: The Gulf Times and The Peninsula.

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