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Archive for October 2012

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

 

Congratulations Ann Maxwell Winner Tesco Charity Mum of the Year

Congratulations Ann Maxwell Has Won the Tesco Charity Mum of the Year

Dravet Syndrome Mum Wins Award

MMT Epilepsy Charity

The Muir Maxwell Trust

We’re extremely pleased to announce that Ann Maxwell, founder of the Muir Maxwell Trust, a paediatric epilepsy charity, won for the Mum of the Year Competition 2013. She will be honoured at London’s Savoy Hotel on March 3. The event will be shown on Channel 5 on Mother’s Day a week later. The Trust is named after Ann’s son Muir who lives with Dravet Syndrome and as the husband and wife team who are at the core of the Trabasack team have a son with the same condition, it is obviously an issue close to our hearts.

Ann Maxwell with son, Muir Maxwell who has dravet syndrome

Ann with son, Muir. Photo Credit: STV

Charity Mum of the Year

The Mum of the Year Award is sponsored by Tesco and looks to find the most inspirational and amazing mums out there. There are just 35 shortlisted women, after over 2000 nominations and we’re especially pleased that Ann has won as her work for childhood epilepsy raises awareness of a range of conditions that many know very little about. Ann found herself nominated as her work in fundraising has secured over £8 million in funding into further research and information about paediatric epilepsy and committed £1 million to the construction of specialist research building at the University of Edinburgh.

The Muir Maxwell Trust

The Muir Maxwell Trust (MMT) was set up when Ann’s son Muir was diagnosed with Dravet Syndrome or severe myoclonic epilepsy. The condition has meant Muir has had seizures throughout his life and this has resulted in speech and developmental difficulties too. Muir is now 15 and via the MMT website you can read Ann’s blog where lots of info and updates regarding Muir’s progress are recorded as well as tons of useful information about paediatric epilepsy and seizures.

MMT aims to provide children with epilepsy and their parents/carers with practical support and in many cases, helping to speed up what can be an extremely slow diagnosis process.

Big Congratulations Ann!

The work Ann and MMT do makes a huge difference to many families and with more than 70,000 children living with epilepsy in the UK, the work is desperately needed. All of us at Trabasack wish you biggest congratulations on winning, which is thoroughly deserved and will help raise the profile of Dravet Syndrome and severe epilepsy in children. It is fantastic news.

Dravet Syndrome Conference Young boy takes part in sensory play using a Trabasack bag

Pictured is Joe the son of the Trabasack founders who was the inspiration Trabasack and who also has Dravet Syndrome.

for people interested in Dravet Syndrome and the latest research, a recent Conference report can be found here.

Ann Awarded her Prize and featured on Channel 5

Charity mum of the year Ann Maxwell

Ann Maxwell, photo credit Channel 5

Many Dravet families proudly watched Ann looking fabulous as she received her Tesco Charity Mum of the Year award on Channel 5. As one mum said “A much deserved award and great that you took every opportunity to tell the listeners about Dravet syndrome and how it affects our children and young people. Well done and thank you!”

 

When Ann’s youngest son, Muir, was finally diagnosed with Dravet Syndrome (a rare form of epilepsy that causes profound learning difficulties, behaviour problems and severe developmental delay) she discovered there was a lack of support available. Ann, 50, from Dalkeith, Midlothian, pledged to help other families get the diagnosis and care they needed.

‘I’d spent a fair amount of time mourning the loss of the perfect child I thought I’d given birth to,’ says Ann. ‘Learning about Muir’s condition was an awakening. He began having seizures when he was four months old and I noticed his language regressing as a toddler, but the medical profession didn’t acknowledge he had special needs until he was three or four years old. After a clinical diagnosis they speculated that he had epilepsy but we didn’t get results from the genetic diagnosis (which at that point involved sending his DNA to Australia and took over two years) until he was 10. That’s late – it impacts on both treatment and prognosis.’

Read the rest of the article here.

NEW book : To Touch An Angel’s Wings

Ann has written down her experiences about Muir’s life and her journey with the family in a new book which will be published soon, called “To Touch an Angel’s Wings”.

“It’s a book about our lives, It’s called To touch an angel’s wings which is pretty much a summary of Muir. Every cloud has a silver lining. He’s affected us, his brothers and everyone he meets.”

We look forward to more news and will update this post when the book is published.