Posts Tagged ‘trabasack’
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 firstname.lastname@example.org. 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
‘Sensory Story’ Project Nears Deadline
We were excited to find a ‘KickStarter’ project, urgently needing last minute donations, that will help children with disabilities enjoy stories. Joanna Grace is trying to raise money to write ten stories that can made available to children and parents at a lower cost than existing resources. Using Kickstarter is a new way of raising money where the people and organisations who contribute get something tangible in return. See below for the awards at different levels of donation.
Using Multi Sensory Objects in Story Telling
Our own son Joe has used similar resources at his school, where the stories used are from Tac Pac. These are bags of different objects that can help to bring a story to life using the senses, a whistle may be blown for a train for example. We have also encountered ‘Bag Books‘ that are actual books created for children with profound learning disabilities.
Sensory Stories Video
The very best explanation of what sensory stories are can be explained by watching Joanne in this video:
With only a few days left Joanne is hoping that a final push will achieve the goal of £5000. Please share this page to help her in her efforts.
Joanne explains the need for Sensory Stories:
The brain needs to receive information from the senses in order to develop. As children we reach out to grab things, turn our heads to watch toys, gurgle in response to music, and as we do these things neural pathways are laid down in the brain. As we repeat the experiences these pathways grow more defined.
Through accessing a variety of sensory experiences connections are created: hand eye coordination is one of these connections and from it stems a whole host of other developmental achievements.
Individuals with profound disabilities and sensory impairments may not be able to access these valuable experiences for themselves. Their senses might not ‘notice’ every day stimuli and so require something more focused. They might not be able to physically access stimuli and so they rely on someone else to facilitate the experiences.
Sensory stories use the five famous senses combined with a distiller narrative to tell a story. Sensory stories are a fun way of providing a range of sensory experiences. They can also be used to: support communication; help individuals express preferences; and to promote socialisation.
The Sensory Story Project aims to create such stories, it only has until the 20th of May to find backers. Backing is a lot of fun as you get to choose a reward in exchange for your good deed: rewards range from sensory stories, to guides on sensory learning or the opportunity to receive a smell in the post!
Sensory stories are fun to share with anyone, but if sharing them with someone with profound and multiple learning disabilities they’re best shared 1:1 and ideally suited to being presented on a Trabasack.
More information is available on the projects page, and we hope you take a look:
Kickstarter Benefits of Donations
Many people are using kickstarter as a new way of raising money because you can pledge different amounts of money and get increasing benefits, gifts or discounts in return.If you are able to contribute to the fundraiser there are benefits for each level of donation:
Pledge £1 or more
A personal thank you email from the author/creator and an electronic guide explaining why sensory stimulation is so important. Your name listed as a backer on my website.Estimated delivery: Nov 2013
Pledge £5 or more
Your choice of two of the following electronic guides. * What makes great sensory stimuli? * How do I share a sensory story? * How can I use a sensory story in school? * Why is sensory stimulation important? Plus your name on website and a personal thank you email from the author/creator.Estimated delivery: Nov 2013
Pledge £10 or more
A single smell experience, plus three of the following electronic guides: * What makes great sensory stimuli? * How do I share a sensory story? * How can I use a sensory story in school? * Why is sensory stimulation important? And your name on the website and a personal thank you email from the author/creator.Estimated delivery: Nov 2013
Pledge £15 or more
A random sensory experience accompanying a line from a story, (think of this as an excerpt from a story). Plus your choice of electronic guides, your name on the website, and a personal thank you email from the author/creator.Estimated delivery: Nov 2013Add £2 to ship outside the UK
Pledge £17 or more
A Sensory Snout Sensory Story Project mascot. Please see our Facebook page for more information. We have a growing menagerie of mascots,each will be hand made by me and everyone will be different. I hope to give you choices concerning colour and scent – yes scent, the mascots provide a tickly touch experience and are also stuffed with cotton infused with essential oils so they’re a fragrant little experience. I’ll put more details on the Facebook page as the project progresses.Estimated delivery: Nov 2013Add £2 to ship outside the UK
Pledge £20 or more
A unique contribution on the topic of Sensory Stories for your blog/magazine/newspaper. Plus your choice of electronic guides, your name on the website, and a personal thank you email from the author/creator.Estimated delivery: Nov 2013
Pledge £25 or more
A sensory smorgasbord: a set of five sensory experiences. (This is not a whole story, but it will be a lot of fun). Plus your choice of electronic guides, your name on the website and a personal thank you email from the author/creator.Estimated delivery: Nov 2013Add £2 to ship outside the UK
Pledge £30 or more
A T-shirt with the unique Sensory Stories logo. The logo is currently under creation but is the word ‘Story’ spelt out with a nose as the S, a hand as the T, an eye as the O, an ear as the R and a tongue as the Y, so great way to share the sensory nature of these stories. I’ll post the logo on the Facebook page as soon as it’s in a suitable state. Colour choices and size options will be sent to backers prior to the rewards being posted. [Note, unfortunately these will not be seamless T-shirts, if you need seemless please get in contact and I’ll try my best].Estimated delivery: Nov 2013Add £4 to ship outside the UK
Pledge £40 or more
A Sensory Story with guidance on how to source the supporting stimuli. (This story won’t have the stimuli with it, but they will be easy for you to find, you may even have them at home already and just not have noticed them!) Plus your choice of electronic guides, your name on the website and a personal thank you email from the author/creatorEstimated delivery: Nov 2013Add £1 to ship outside the UK
Pledge £50 or more
A boxed (resourced) Sensory Story, or your choice of a previous reward. Plus your choice of electronic guides, your name on the website and a personal thank you email from the author/creator.Estimated delivery: Nov 2013Add £7 to ship outside the UK
Pledge £60 or more
2 Sensory Stories with guidance on how to source the supporting stimuli, or your choice of a previous reward. (These stories won’t have stimuli with them, but they will be easy for you to find, you may even have them at home already and just not have noticed them!) Plus your choice of electronic guides, your name on the website and a personal thank you email from the author/creatorEstimated delivery: Nov 2013Add £2 to ship outside the UK
Pledge £80 or more
2 boxed (resourced) Sensory Story, or your choice of a previous reward. Plus your choice of electronic guides, your name on the website and a personal thank you email from the author/creatorEstimated delivery: Nov 2013Add £15 to ship outside the UK
Pledge £100 or more
Personalisation. The opportunity to have a story personalised with your details or the details of a loved one. The story will be personalised with names and locations of your choice. [You have the option to choose one of the previous rewards instead]. Depending on the story there may also be other opportunities, for example to put in favourite colours, foods or animals. You will receive the story when it is complete, along with guidance on how to source the stimuli. (This story won’t have the stimuli with it, but they will be easy for you to find, you may even have them at home already and just not have noticed them!) You will also receive your choice of electronic guides, your name on the website and a personal thank you email from the author/creator.Estimated delivery: Nov 2013Add £7 to ship outside the UK
Pledge £150 or more
A talk about Sensory Stories to an audience of your choice. [Happy to travel to any location but will need transport costs.] You have the option to choose one of the previous rewards instead. Plus a Sensory Story and guidance on how to source the supporting stimuli. (This story won’t have the stimuli with it, but they will be easy for you to find, you may even have them at home already and just not have noticed them!) Plus: your choice of electronic guides, your name on the website and a personal thank you email from the author/creator.Estimated delivery: Nov 2013
Pledge £200 or more
The whole caboodle! [You have the option to choose one of the previous rewards instead]. The complete library of boxed Sensory Stories, resourced with stimuli and guidance on delivery, plus a complete set of electronic guides, your name on the website and a personal thank you email from the author/creator.Estimated delivery: Nov 2013Add £15 to ship outside the UK
Pledge £400 or more
A talk about Sensory Stories to an audience of your choosing. Transport included for anywhere within the UK. [You have the option to choose one of the previous rewards instead]. Plus a Sensory Story and guidance on how to source the supporting stimuli, (This story won’t have the stimuli with it, but they will be easy for you to find, you may even have them at home already and just not have noticed them!) You will also get a complete set of electronic guides, your name on the website and a personal thank you email from the author/creator.Estimated delivery: Nov 2013
Pledge £750 or more
The opportunity to co-author/create a story with the author/creator. You can contribute story ideas, experiment with stimuli, add personalisation including names of loved ones. I am happy to share the authoring experience with anyone of any age and any ability. This reward would particularly suit an individual with PMLD (profound and multiple learning disabilities) You will be credited on the story and will receive a boxed resourced copy of the story once it is complete. Plus all the electronic guides, your name on the website and a thank you email from the author/creator.Estimated delivery: Jul 2013
Time is running out!
With only a few days left Joanne is hoping that a final push will achieve the goal of £5000. Please contribute if you can and share this page to help her in her efforts.
Skoog – The Squishy Cube that is Now Available on the Apple Store!
We have been big fans of skoog since we first saw it and are thrilled to see it breaking through into mainstream use, and now it is EVEN AVAILABLE ON THE APPLE STORE!
The Skoog is a curiously titled electronic device that, when combined with computer software, can bring the world of art and music to life for those with learning difficulties and physical disabilities.
“What exactly is a Skoog?!” I hear you ask – well, the Skoog is a soft, durable cube with coloured convex semi-circles on each side that work as buttons. It is made from a tactile and squeezable foam that really appeals to sensory desires, and when the “buttons” are pressed (or hit, tapped and even if the Skoog is shaken-about!) musical notes are created through the computer software.
Skoog Video from The Apple Store – all music featured made using a Skoog
The Skoog has been created to be easy to use and implement at home or in an educational setting – so simple to set-up, it simply connects to either PC or Mac via USB and once you have the correct software installed, you’re away!
The simplicity of usability of the Skoog makes it ideal for children and adults with learning difficulties or physical impairments, especially in comparison to traditional, conventional instruments. The sounds that can be created are endless, from the smooth, airy notes of a flute, to the warm pluck of Spanish guitar strings – all these creative noises and more are literally at fingertips of anyone who uses it.
What’s more is that the Skoog can be activated using any body-part (such as the chin, elbow, feet etc), which adds further accessibility for those with limited movement and dexterity, or those with physical disabilities.
The Skoog is itself touch-sensitive, and this setting can easily be altered whenever needed through the advanced software used to create the musical output for the Skoog. This not only enables the user to pick an instrument of choice to experiment with, but also allows for further creative expression – changing the timbre and force with which the notes are produced, providing endless scope for creating musical art.
The Skoog is a fantastic and innovative creative tool that has helped many children and adults around the world create music and art with ease, providing them with confidence, a sense of progress and achievement, and not to mention, an abundance of musical fun!
Pioneered by Disabled Musicians
Amongst the many pioneering electronic musicians who champion the Skoog as an instrument of choice is Charlotte White. Charlotte had an accident when she was in her early teens, and although it took a lot of strength and courage, she was determined to continue on her musical journey that she started before the accident.
Charlotte’s muscular-neuro disease has made it difficult to use musical instruments in the traditional way, but with the help of a number of innovative technologies such as the Skoog, she has been given the chance to create music again and be part of a number of orchestras and ensembles that have performed across the globe.
Charlotte is currently working on a new composition using the Skoog, and you can see photos of her performing with the Paraorchestra in Qatar here, along with a little help from her trusty Trabasack (or “Trabba” as Charlotte calls it!
The Skoog Goes Mainstream
Although the Skoog is of course ideal for aiding those with disabilities to creatively express themselves, it is also proving to be quite a hit as a versatile, mainstream musical instrument.
Fantastic news is that the Skoog is now available to purchase directly from the mainstream outlet of the Apple Store across Europe. The Skoog’s quirky design and unusual usability is sure to appeal to many at-home maestros and professional instrumentalists alike – and moreover, can now be purchased so simply with just a few clicks!
To illustrate the creative possibilities of the Skoog, watch the video below of the inimitable Brett Domino, doing a rather idiosyncratic cover version of the OutKast hit “Hey Ya!”
The Skoog reviewed in Future Music Magazine
The Skoog has also recently been reviewed in Future Music Magazine. Describing as a “distinctive, squishy, colourful object” and suggesting that you “pair it with an AlphaSphere for the ultimate WTF controller set up. 8/10″
The Skoog is so intuitive to use, and so much fun, there are seemingly endless creative ways of using it to create your own musical masterpiece. Click here to view and purchase the Skoog from the official Apple Store UK.
We are registered suppliers with the Disabled Living Foundation a national charity that provide impartial advice and information about daily living aids.
They also have a very useful forum on the Living Made Easy site where people can pose questions and thier experts will try to help people find solutions to the difficulty by suggesting a range of equipment.
A while ago I answered a question on the Disability Living Foundation (dlf) forum website. Stuart, a dad, was looking for a suitable wheelchair tray for his daughter’s buggy.
He posted ”
I have been trying with no luck so far to find a wheelchair tray that can clip on to my daughters chair for playing on.
Her chair is a Hoggi Bingo but I am hoping for something that is generic so we can move it from chair to chair. I dont think Hoggi do one anyway.
Can anyone give me an ideas?”
I replied asking him to take a look at our website. Trabasack has a selection of straps and ways of attaching so that it can be used on different chairs and buggies. This obviously saves people space and money.
Stuart said that he intended to buy a Trabasack for his daughter’s birthday. I was delighted to find this video appear on You Tube a few days later.
Lily is using Trabasack as a sensory play tray. The Trabasack she has is a Curve Connect which has a soft velcro receptive surface, so if Stuart wanted he stick the drums to the surface with velcro tape.
However she is obviously having a lot of fun anyway!
- 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