We are now able to supply fingertip monitors to all our members. Read more about this, and catch up with the rest of our news in our latest email newsletter
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Charity update
This summer has seen a fantastic amount of fundraising. We have been overwhelmed by people’s generosity and would like to thank everyone who has climbed a mountain, run for us, baked cakes, and lost weight all in the name of DSUK! These funds allow us to continue to provide families with monitors, fund family grants and award research grants into Dravet Syndrome.
We are excited to announce that Dravet Syndrome UK are now able to supply every family with a Pulmolink fingertip monitor. Even if you already have an alarm or monitor you are still eligible to apply for these fingertip monitors.

These monitors are NOT alarms but they are ideal to monitor sats during a seizure and when you are out and about. DSUK know that it is sometime hard to detect when a seizure has started or finished and these fingertip monitors will give a reading of the person’s heart rate and oxygen levels to help identify and monitor a seizure’s progression.  As they are small and portable they can be kept with the persons rescue medication. They are suitable for anyone over the age of two.

For more information, and to apply, please complete our on-line application form:
The Teddy Bear fingertip monitor suitable for children aged 2- 10 year old.
If you have a monitor at home that you no longer use for any reason then Pulmolink will take these monitors and refurbish them for us to give to another family. This allows other families to benefit from a monitor that wasn’t being used. Please get in touch with Linzi to discuss returning any redundant monitors
2015 Conference – save the date
We are starting to plan our 2015 conference. We are going to hold a two day conference, the first day will be for Professionals only, and the second for family and carers followed by a ball.  We are aware that the levels of care for Dravet Syndrome vary across the country and we are keen to improve healthcare professionals understanding of Dravet Syndrome, so on the Friday we will be holding an educational day for all Healthcare Professionals with an interest in Epilepsy to attend. 
The conference will be held in Surrey, venue to be confirmed shortly. The provisional date for the family day and ball is Saturday 7th November 2015 so save the date!
Earlier this week we held one of our twice yearly Dravet clinics at Evelina Children’s Hospital, London, for Dravet families under the care of Dr Elaine Hughes to meet up. The discussion at this meeting was feeding issues and how to try and tackle these. If your child is under the care of Evelina and you have an issue you would like to be discussed at the next meeting please let us know.
New merchandise
We have a great range of merchandise to help support your fundraising and raise awareness. There are new bags, pens and water bottles in the on-line shop with some car stickers on the way!
Super Siblings award
Thank you for the nominations we have so far received for the super siblings’ award. The deadline for nominations is Monday December 1st, so there is still time to nominate an amazing sibling! This award is an annual event, the winner will be announced just before Christmas.
DSUK Assistance Fund 16+
Our Adult fund has been renamed to the DSUK Assistance Fund 16+. We hope this makes it clearer who is eligible to apply for the fund. There is more information on our website:
Research application
We have nearly reached our deadline for the 2014 Research Grant Applications for our next research project and hope to make an announcement very soon.
Adult Education Workshop for Neurologists
The Adult Education Day, run in collaboration with Prof. Sanjay Sisodiya and specifically for neurologists is taking place next month at the Epilepsy Society campus. We will feedback from this event in the next newsletter.
Don’t forget you can contact us by email
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Copyright © 2014 Dravet Syndrome UK, All rights reserved.

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