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Posts Tagged ‘dravet syndrome research’

International Dravet Syndrome Awareness Day 2015

2015 Dravet Syndrome Awareness Day Logo

2015 Dravet Syndrome Awareness Day Logo

Dravet Syndrome Awareness Day 2015

This year International Dravet Day is celebrated on 23rd June 2015, and it has a special significance at Trabasack HQ as the son of Duncan and Clare, the creators and founders of Trabasack, lives with the condition. International Dravet Day is a chance to raise awareness and this year, the charity Dravet Syndrome UK are suggesting we ‘take a break’.

The charity are suggesting that 23rd June should be the day where we all take the time out to enjoy a cake and a cup of tea to help raise awareness for the condition and to help raise funds and support the work the charity is doing to fund research and further awareness of the rare syndrome. They are giving people the chance to put together their own fundraising events in awareness and you may be able to find one near you. If you’re interested in finding out more they are offering special International Dravet Syndrome Awareness Day fundraising packs via linzi.c@dravet.org.uk. This is only the second time 23rd June has been recognised at Dravet Syndrome Awareness Day so it’s a real opportunity to

Dravet Syndrome and Trabasack

Joe at 4 with one of the first Trabasack lap trays

Joe at 4 with one of the first Trabasack lap trays

Our first Trabasacks were created for Joe and because of Joe. Joe was diagnosed with Dravet Syndrome as well as a SCN1a deletion, linked to the condition, where he was just four. He is non-verbal and has support with most daily tasks and to support Joe, the Trabasack team always ensure they attend the Dravet Conference and are aware of any new treatments and research into the condition.

Joe is now 11 and still using his trabasack every day

Joe is now 11 and still using his trabasack every day




Joe has always had seizures and this has meant that traditional buggy and wheelchair tray designs were simply too dangerous for him and therefore his parents needed a solution that was more lightweight and easy to remove, giving him the space needed when having a seizure. His mum Clare began designing and soon a soft beanbag cushion with a tray on top had come together and Joe was able to access his toys and games. The design worked perfectly and was developed further to include a Velcro receptive top to keep things in place. The tray was designed to fit closely to Joe’s body, meaning he could play his arms comfortably on top of the tray and this original idea was refined and reworked to create the Trabasack, a retail product which thousands of people use in all sorts of ways.

2015 DSUK Conference

Dravet Syndrome UK Conference 2015

Dravet Syndrome UK Conference 2015

This year’s DSUK Conference is in November and as the only Dravet Syndrome specific conference in the UK it is of high importance to the family behind Trabasack, as well as many other people across the UK. The conference is designed to provide information, innovation and support and where possible answer questions that parents, carers and professionals may have. On 7th November the conference is holding its Family Day where a panel of internationally renowned experts will be attending to discuss the latest innovations and research in the field. Family Day also features a disco, buffet and the opportunity to network and connect with others.

Speaker at Dravet Syndrome UK Conference 2012

Speaker at Dravet Syndrome UK Conference 2012

The Professional Conference takes place the day before the Family Day where a wide range of professionals involved in working with people with Dravet Syndrome, including teachers, GPs, nurses and neurologists have the chance to learn more about the condition and crucially the challenges involved.

In 2012 the Duncan from Trabasack attended the Dravet Conference in Warrington and got together a wide range of notes and information in tweet form, fantastic for looking back on when this year’s conference comes around. This Storify feed is an amalgamation of all the notes together in one place to get a good feel for what happened back in 2012, in preparation for 2015.

The DSUK Professional and Family Conference in November is being held at Tower Hotel, St Katherine’s Way, London.

New Research for DSUK in 2015

Professor Sisodiya - leading up a new research project into Dravet Syndrome this year

Professor Sisodiya – leading up a new research project into Dravet Syndrome this year

Alongside announcing their fundraising plans for International Dravet Syndrome Day, as well as the Conference at the end of the year, the team at DSUK have delightedly announced a new research project for 2015.

This new ground-breaking research project will be undertaken by Professor Sanjay Sisodiya and his team at University College Hospital London. It is looking at ‘Genetic influences on cognitive function in Dravet Syndrome’ and has received grant funding from DSUK who believe it could make a huge different to how we understand the condition.

Raising Awareness for Dravet Syndrome

With all of the above happening to focus on Dravet Syndrome happening in 2015 it is a year where real focus and awareness can be raised. It is an extremely rare condition which is believed to occur in between 1 of 20,000 and 1 of 40,000 births. Children with Dravet Syndrome are at a higher risk of sudden unexplained death in epilepsy than children with other forms of epilepsy. Despite this, Dravet Syndrome UK statistics suggest that children have an 85% of surviving into adulthood and this has meant a need for more adult specialists in the condition.

There are a wide range of different treatments for Dravet Syndrome that range of antiepileptic medications to diet plans, specifically the ketogenic diet which has found to have a positive impact for some individuals. More treatments are regularly being researched and tested to give people living with Dravet Syndrome the best possible quality of life.

It’s no surprise that Dravet Syndrome awareness is close to the hearts of the Trabasack team and we will continue to provide relevant updates, event notifications and awareness day announcements as they occur.

Visitors to this site can access a special bundle offer for trabasack at this link