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Another successful European Tay-Sachs & Sandhoff Disease Family Conference!

The European Tay-Sachs and Sandhoff Charity Consortium (ETSCC) held the 4th Annual Tay-Sachs and Sandhoff Family Conference at Disneyland Paris between the 3 – 6 June! The conference brought together many families affected by the diseases across Europe to hear presentations about the current state of the research for a treatment, updates on the consortium charity members and more in-depth presentations on the role of feeding in children affected by Tay-Sachs and Sandhoff disease.

Fun at Disneyland

Families spent the first day at Disneyland which gave everyone the opportunity to meet Mickey Mouse and his friends! In the evening there was a welcome dinner at the Rainforest Cafe where people were able to catch up with one another. This year there were families attending from the UK, France, Spain, Germany, Austria, Sweden, Portugal and the US who all shared their experiences of looking after their children.

A day about feeding

On the second day the conference was officially opened by Daniel, as the chairman of the ETSCC and there were fascinating presentations about the role of feeding. Anita McDonald from Birmingham Children’s Hospital talked about the importance of feeding for a child’s development in those affected by Tay-Sachs and Sandhoff and then gave an overview of feeding intervention. This enabled all those attending to gain a deeper understanding as to why different types of intervention are suggested by doctors.

Following this talk was Mary-Anne Leung from the Evelina Children’s Hospital in London who gave a presentation about the ketogenic diet and why some children with Tay-Sachs and Sandhoff disease try this diet. This was then followed by Kim Lewis, who is a speech and language therapist from the Evelina Children’s Hospital who gave a presentation about the anatomy of someone’s swallowing and how a child can be supported.

Our science and research day

After the second day there was another group dinner and we were delighted to be joined by Mickey Mouse! All of the children (and adults!) took the opportunity to have their photo taken during an amazing meal.

The third day was the science and research day and we began with Begona Cachon Gonzalez from the University of Cambridge who gave an overview of the gene therapy work which is being undertaken in Europe for Tay-Sachs and Sandhoff disease. Professor Cox then gave everyone an update of this work and how any gene therapy treatment for Tay-Sachs and Sandhoff work. Our final science and research speaker was Dr Mario Cordero from Seville University who gave an interesting talk about a new inflammasone complex treatment for Tay-Sachs.

The afternoon sessions of the conference included an inspring talk by Ken Bihn from the Cure Tay-Sachs Foundation (CTSF) in the US. Ken talked about how the charity was started after his daughter Dakota was diagnosed with Tay-Sachs and how he, his family (Julie and Bailey) and his friends have driven it to raise millions of dollars to fund the research for Tay-Sachs. Our final talk was by the amazing Allie Colaco who talked about how losing her twin brother to Tay-Sachs at a young age has inspired her to work and study biology where she is now finishing her PhD at Oxford University.

We would like to say a big thank you to all the families and speakers who joined us at Disneyland Paris and made the event such a huge success!

There were some great photos taken during the conference and these can be found on our Flickr page here – a selection of photos can also be found below.

Photos from the family conference

Some photos from the event can be found below and more are available on our Flickr page here.
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