Posts Tagged ‘dravet syndrome’
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 email@example.com. 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
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 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
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.
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
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
Here we have part 2 of our recommended apps for children with Dravet Syndrome.
Each app is simple and easy to use and most importantly, packed with fun features and interactive games to not only entertain, but educate at the same time.
In our first blog post we covered the pre-school classroom range of educational apps, along with some fun “make it yourself” games and the Splat the Clowns and Peeping Musicians targeting/hand-eye coordination apps.
In this post we will cover a collection of cheery and traditional interactive story books, nursery rhyme apps for rhythm and speech development, and basic flashcard-type apps.
The Kidztory Book Collection
The Kidztory storybook collection includes a number of traditional fairy tales and stories brought to life for the iPad and iPod. These interactive books are a fantastic way to share all the stories you loved as a child with your own children, and each “book” is beautifully illustrated and narrated, to provide a truly joyful experience for your child.
Grasshopper Learning Apps
Each app in the Grasshopper range provides a fun and educational approach to the basics of pre-school learning. They are also highly-customisable, allowing the parent to change almost every setting and feature in the app through a special settings panel. This allows you to add and remove items such as pictures and words, record your own voice and provide a bespoke learning experience for your child. If you child finds it easier to learn and understand when provided with items and voices familiar to them, then these apps are ideal.
Special Numbers, Special Words and Special Stories
The “Special” apps created by Special iApps developers all base their design on a straight-forward, uncluttered learning environment, that is immediate to the child and easy to navigate. The Special Numbers, Words and Stories apps cover 3 main learning areas; Special Numbers introduces your child to early number skills through a variety of set activities such as counting, matching, ordering, comparing and selecting.
Special Words is designed to help your child to recognise early vocabulary in written words and will encourage them to vocalise whilst also improving their hand-eye coordination and fine motor skills.
Lastly, the Special Stories app allows you and your child to create and share stories with text, sound and pictures / photographs. The simple interface is suitable for children and adults with poor motor skills, hearing impairment and general additional educational needs.
Nursery Rhymes and Princess Fairy Tale Maker
The Duck Duck Moose collection of children’s nursery rhyme apps are a fantastic way to help your child with rhythm and speech development through the use of traditional songs and music. Each rhyme app is filled with interactive pages, original illustrations and are sure to thrill and captivate and capture your child’s imagination. There are currently three nursery rhyme interactive story book titles available from Duck Duck Moose; Itsy Bitsy Spider, Wheels on the Bus, Old MacDonald and Baa Baa Black Sheep.
The Princess Fairy Tale Maker allows your child to make their very own fairy tale using a huge collection of animated backgrounds, animated “stickers” and almost 30 different crayons and colouring pencils. The stickers can be moved about and recorded, to make movies, and your child can add their own voice to create a truly fun fairy tale experience!
Different Roads to Learning Apps
The Different Roads to Learning range of apps are especially designed for children with additional learning needs, such as autism, Downs Syndrome and Dravet syndrome.
They cover many of the basic educational subjects, along with general communication issues and development.
Each app is fully-customisable and also keeps a record and statistics of your child’s usage and achievement within the app. This is a great way to give them independence to play and learn, and allows you to analyse and monitor their progress at a later date in your own time.
Toddler Flashcards, Counting and Animals
The iTots range of toddler apps are as simple as you can get, but with this simplicity comes ease of use for little ones with additional learning needs. The interface of each app is clean and clear, and uses bright and fuss-free images of everyday items that your child will immediately recognise.
The Toddler Flashcards game is a basic flashcards app that provides your child with images of everyday items and provides the word written underneath and also verbally. You can also choose from a number of languages, including English.
The Counting and Animals apps are similar to the Flashcards app, and offer endless interactive fun if your child prefers specific subjects (such as numbers or animals). The game will ask your child very simple questions which can be answered via touch screen, and rewards them with every correct answer they give.
Want more? Check out our series of apps recommended by Specialist Education and Technology Trainer Ian Bean.
Apps suggested by Dravet Families
Thanks to modern technology, devices such as iPad tablet computers have revolutionised the way we can play with and educate our children. Moreover, touch-screen devices are especially useful for children with additional learning needs, such as those with Dravet Syndrome and autism.
There are so many apps around, and lists of apps(!), it was great to receive this list that was suggested by parents of Dravet children on facebook.
This list from Dravet Syndrome UK which covers some of the best iPad apps available for kids and young adults with Dravet Syndrome. Whether you are looking to strengthen their vocabulary understanding or just let their creative side loose, there’s an app to keep your child entertained and stimulated.
These apps may of course be useful for other children with learning disabilities and autism.
Pre-School Classroom Range
The Pre-School Classroom range of software offer a number of educational titles that cover basic subjects such as maths and English. Each app is created with simplicity in mind, and an added bonus is that none of the apps include any “in-app” purchases – which can become annoying and confusing for little ones using apps.
Mr and Mrs Potato Head
These Mr and Mrs Potato Head apps are based on the classic children’s toy we all knew and loved as children ourselves. The app is simple yet fun, allowing your child to decorate and dress Mr or Mrs Potato Head with only the touch of the screen. The ability to change the facial expressions and outfits will hopefully allow your child to learn more about emotional differences and help them to express their own feelings through the app.
Splat the Clowns
Splat the Clown is a simple and amusing target game, involving clowns and… custard pies! The game features a number of settings to change the difficulty and speed of the target, and will help your child develop their fine motor skills and hand-eye co-ordination whilst having lots of fun. Splat the Clown is switch compatible.
Peeping Musicians is another targeting app that helps children to develop their looking and observation skills. A number of bright and furry characters will hide from the user, and when they “peep” out the child must simply touch them on the screen and they will be rewarded with a centre-stage musical number from the character. This app includes 20 different characters and instruments to find.
Crazy Cats Inc Range of Fun Food Apps
The team at Crazy Cats Inc have created a number of apps which are all based on the same idea, yet each with a different theme. Each app allows children to concoct their own culinary creation – including doughnuts, cookies, pizza, cupcakes and more!
In each app your child can choose from a number of ingredients and colourful (and tasty-looking!) toppings to produce their own dream dish. The basic apps are free, and will involve in-app purchases to provide further toppings and options.
My First App Range
The My First App range of games are simple and colourful apps that cover all subjects from matching, building, sorting, music and more.
Each app is super-colourful and easy to use, yet still providing your child with hours of fun and entertainment. The simple touch screen usability and eye-catching animations will capture your child’s imagination whilst teaching them some of the most fundamental learning skills needed for building language and numeracy.
Part 2 of our apps suggested by Dravet families can be found on the next post.
We have many more apps aimed at children with special education needs on this blog. There is a click here for a series suggested by Ian Bean an education and technology specialist.
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.
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.
The full ‘tweeted’ notes and information from the conference can be found at on this conference report written up using Storify here:
Young Epilepsy Conference 2012
The Trabasack Team are delighted to announce their appearance at The Young Epilepsy National Conference. Young Epilepsy, in association and collaboration with Matthew’s Friends are holding a two day National Conference at St John’s Hotel, Solihull on 12th and 13th August.
As parents of a child with Dravet Syndrome, the husband and wife team behind Trabasack are passionate about attending events that raise Epilepsy Awareness and their universally designed product range is ideal for use by children and adults with epilepsy and related conditions. Raising awareness of Dravet Syndrome and the often devastating effects of epilepsy on young people, this important event will help bring together professionals, parents and new developments in the treament and management of the disease.
Son of Trabasack Creator and the Ketogenic Diet
The co-hosting charity Mathews Friends provides information about a dietary treatment for epilepsy called the ketogenic diet. A high fat, low carbohydrate diet that the Trabasack director’s son followed for 5 years, with tremendous success. In the early days of the treatment they obtained essential advice and support from the charity.
The Young Epilepsy Conference Schedule
The event itself is split into two separate days aimed at different audiences and Trabasack will be present at both with their full product range on display for sale and to answer any questions potential customers may have.
Friday 12th October is a dedicated conference day at the event for professionals working directly with families of children and young people with complex epilepsy in a community environment. The day will be made up of several sessions :
• Diagnosis and Misdiagnosis
• Advances in treatment
• Impact on the wider family
• Case Studies
• Supporting the Family
• Changing Society’s Perception
Talks will be given by UKs foremost experts in the study of epilepsy including:
- Prof Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy
- Dr Sunny Philip, Birmingham Children’s Hospital
- Dr Archana Desurkar and Dr Krishna Das, Young Epilepsy
- Epilepsy specialist n
urses and parents who have experience of living with complex epilepsy.
The Trabasack team will be present all day with their dedicated stand and products on display. Tickets for this event are bookable via the Young Epilepsy website and there are early bird discounts available.
Saturday 13th October is a little bit different to the previous day as it focuses on the expectations and needs of the parents and carers of children and young people with complex epilepsy. It also gives them the chance to meet other families in the same situation and form some valuable support networks and relationships. Topics and sessions throughout the day will include:
• Complex Epilepsy Syndromes and Treatments
• Support through education
• Syndrome-specific group discussions
• Behaviour and impact on the wider family.
Tickets for the second day of the event are bookable now via the Young Epilepsy website or on 01342 832243 the booking line, or click the images to download a conference booking form.
The Trabasack team will have their whole product range on display, with representatives present to explain exactly how their innovative products can be of beneficial use to those living with epilepsy and related syndromes.
The Trabasack lap tray and bag is an innovative and universally designed product that combines a lightweight tray surface, great for holding media devices, switches, communication aids, food and drink and much more, with a spacious bag compartment for storage of said items. It also includes a soft bean bag tray and is extremely lightweight so can be rested upon any lap without causing any discomfort. The current range includes the Trabasack Curve, designed ergonomically to hug the curves of the body and the smaller Trabasack Mini, designed for smaller devices such as netbooks and iPads. Both these products will be on display at the event.
Trabasack has also recently launched its Media Mount multipurpose mounting device which serves to provide extra support and add extra functionality to their lapdesk products. The Media Mount can support the use of communication aids, tablet devices and even hold simple things such as a bottle of drink in place.
Further demonstration of the product in action will be seen at the Young Epilepsy National Conference.
The video below shows Joanna Lumley at a previous Young Epilepsy event at Glyndebourne.
- International Dravet Syndrome Awareness Day 2015
- Six Neck and Head Support Options for your Child
- Gripping Aids for Children
- Sensory Stories for Children and Teens – The Book!
- What to Pack for your Child’s Hospital Stay
- How to make your own Sensory Wall
- Homemade Mirror Cube Sensory Toy
- Join Trabasack and Active Hands at Kidz in the Middle
- Sensory Play at Naidex National 2014
- Festive Christmas Apps for Kids