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Posts Tagged ‘dravet syndrome conference’

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

https://sensoryplaytray.com/product/curve-connect/

Dravet Conference UK for Professionals and Family 2012

Dravet Conference 2012

In November 2012, The Dravet Syndrome UK charity will be hosting their second annual Family and Professional Dravet Conference and the Trabasack team are happy to be attending. Taking place on 17th November, at The Park Royal Hotel in Warrington the conference has attracted many leading speakers in the field and as the husband and wife team at the centre of the Trabasack Company are parents to a child with Dravet Syndrome, attending the conference is extremely important to them personally as well as professionally. After attending the first event two years ago, Trabasack is back for a second time, after being at the very successful Dravet Conference 2010.

The Trabasack story appeared in the Dravet Syndrome UK’s Spring Newsletter, highlighting how their son was the main inspiration behind the product and how it was developed with his and the needs of others living with Dravet and similar syndromes in mind. The product has since been developed further and has a multitude of users with many different needs.

What is Dravet Syndrome?

A life limiting, genetic condition that causes severe epilepsy, learning disability and global developmental delay in childhood. The seizures are usually hard to treat and do not respond well to epileptic drugs. A scientific paper describing the symptoms can be found here.

This Year’s Event: Dravet Conference 2012

Many fantastic speakers have been confirmed for this year’s event, including Dr Charlotte Dravet herself as the guest of honour. Other speakers include a range of specialist consultants from hospitals across the UK including Alderhey Children’s Hospital in Liverpool and Yorkhill Hospital in Glasgow. Professor Mark Reese and Doctors Chung and Thomas from Wales Epilepsy Research will also be joining the other speakers at the event.

Our son joe laying on a trabasack play tray

Our son Joe enjoying a sensory garden

A range of interesting and essential topics will be discussed in depth including advancements in research, the value of early intervention, alternative treatments including the Ketogenic Diet and much more. There will be also a chance to hear of updates on many of the research projects currently funded by Dravet Syndrome. Anyone with a personal or professional interest in the area can attend the event, with both professional and family tickets available.

Who are Dravet Syndrome UK?

Dravet Syndrome UK is the leading UK charity which works to improve the lives of both adults and children living the Dravet Syndrome and other related sodium channel epilepsies. They achieve this in a number of ways from special events like the conference, to fundraising, medical research and providing support to families and individuals who require it.

The charity has three main aims to advance education, to fund research and to promote health and the Trabasack team are keen to support these goals in any way possible.
Dravet Syndrome is described as a severe form of epilepsy and can cause further issues including difficulty in the development of language, motor skills and social skills.
The second annual conference is sponsored by Nutricia and the Dravet Syndrome Foundation and the Trabasack team will be amongst many attendees and exhibitors.

Trabasack at the Family and Professional Dravet Conference 2012

Trabasack will have and exhibition display stand where product information and the new Media Mount, switch and toy mount will be available to purchase. The full range of Trabasacks and accessories will be on the stand. The most popular one for Dravet children is the Curve Connect because of the option of mounting, toys, iPads, switches and other devices with velcro onto the tray surface. A bumper Trabasack pack including all of the accessories will also be a prize in the Dravet Charity Ball Raffle. The raffle organisers are still looking for donations to the raffle which will include a prize of a chocolate hamper and a gift voucher hamper.

UPDATE

The full ‘tweeted’ notes and information from the conference can be found at on this conference report written up using Storify here:

Dravet Conference tweeted notes