MeetUp

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DYRK1A Family MeetUp

July 30th 2016

We had a successful 1st DYRK1A Family Meetup that was held in Cincinnati Ohio. There were 10 families in attendance with approximately 40 people all together.

The weekend of gathering started Friday evening during pizza and social time at the hotel. Saturday morning we met at Cincinnati Children’s Hospital in the Sabin Auditorium and started off with 3 speakers. Lucas Bronicki spoke about the basic genetics of DYRK1A associated intellectual disability. Dr. Bronicki was one of the lead researchers of the publication describing the syndrome’s phenotype. Rachel Earl spoke about the Tiger Study which stands for “The Investigation of Genetic Exome Research”. The study is researching multiple genes associated with Autism and is being preformed under the Bernier Lab. Andy Faucett spoke about SimonsVIP Connect and the importance of participating in research. They are also studying multiple genes associated with Autism. We then kicked off the afternoon by doing music therapy with the kids. After the fun was over we had to get to business by having a group discussion on what we would like to accomplish as a group. We ended the fabulous weekend on Sunday at the Cincinnati zoo.

The whole weekend was an amazing experience for many of those in attendance. People shared that it felt like we were all family. It was heart touching seeing the kids interact with one another. Each of the kids came with their own unique personality and differences but the similarities were also very striking. Stay tuned for next years gathering………