Without a Diagnosis Celebrates BJTC Awards Success
“Without a Diagnosis”, the documentary produced by Kat Williams, was awarded runner up in the TV Documentary category at this year’s BJTC Awards in Coventry.
The award, which celebrates student journalism from across all accredited UK universities, was presented by Political Correspondent Chris Mason at a ceremony in St Mary’s Guildhall in Coventry.
Kat Williams, who produced, filmed and edited the documentary, was also awarded the prestigious Steve Harris award for Student Journalist of the Year to recognise her use of blogging, social media and marketing throughout production.
Without a Diagnosis has been seen by nearly 4000 people in 46 countries worldwide and aims to promote awareness of undiagnosed genetic conditions and the vital work of both Syndromes Without a Name and the Deciphering Developmental Disorders Study in Cambridge.
Could you cope? – Undiagnosed Childrens Awareness Day 2013
Could you cope?
Could you mother a child with a syndrome- no name
Deal with the stares, and live feeling strange
Your child is ill and there’s no reason why-
The doctors can’t help him, they just nod and sigh.
There’s too many people who cope day and night
Through tears and anger, inconsolable fright.
Who don’t have one reason for what could be wrong
Will their development change, will the fits last so long?
Today is your chance to help those in need.
Wear pink and wear blue- it’s April 13th.
Help raise some awareness and highlight the pain
Of 1300 people who have a Syndrome Without A Name.
Inside DNA
Last week I visited Inside DNA, a travelling exhibition currently at New Walk Museum in Leicester. In my opinion, its a must see for all interested in genetics.
Developed by At-Bristol on behalf of Ecsite-UK it brings together interactive exhibits such as games, quizzes, videos and puzzles to quench your curiosity and help you decide your views on how we use genomic research today.
And the best bit?! All your opinions are fed back to the Human Genetics Commission- the UK Government’s advisory body for genetic research!
My Favourite Exhibits:
Build your own DNA sequence– and then find out how frequently its found in your DNA
Neanderthals- how closely related are we? Fill skulls with beads to measure their volume, examine skeletons and compare the handmade tools of our ancestors.
Build a protein. Using the genetic code (ATCG) build yourself a protein- but can you do it fast enough?
There’s also a section on genetic testing, with videos and information about genetic disorders, choices for tests and individual stories. Although undiagnosed children don’t feature, the exhibit provides a real insight into some extremely rare conditions.
The exhibition will be at New Walk Museum until the 7th April. To find out more about the exhibit, and if its coming to a town near you visit the website.
Without a Diagnosis featured on BritMums Special Needs Roundup
If you haven’t seen it yet, the BritMums SEN Roundup is a must-read for parents of children with Special Needs. These posts bring together blogs and websites most relevant to you- a chance to pick up tips, or just raise a smile from reading the adventures of other families just like yours.
Without a Diagnosis was recently featured in the round up! Click on the screengrab to take you to October’s SEN Roundup!
First Aid for Parents
This weekend I have heard dreadful news of two families whose undiagnosed children have been taken to hospital for serious seizures.
During my filming I was told that several families with undiagnosed children, who suffer seizures, had not been given First Aid training. They had said that they could not afford a course themselves, but after past experiences of having to revive their child once before they were worried about what to do if it should happen again.
The dreaded day came and after being blue-lighted to hospital, these parents have been offered some training in CPR.
My question is: why only now? Must it always be that services are put into place only when the worst happens?
I am sure there are plenty more parents out there who qualify for first aid training. I think it’s time we did something about it.
BBC- Human Genome ‘more active than thought’
Very impressed by the clever use of media and graphics by the BBC to explain genome research.
Have a watch by clicking on the screen grab below- it will redirect you to the page.
Keith Addison’s Review
Another amazing review of Without a Diagnosis from a SWAN parent’s perspective.
Please visit Keith’s Blog to read what he has to say about the project!
(PS; Thank you, Keith 🙂 )
Lets Paint the World YELLOW
Hooray! Here are the site stats for www.withoutadiagnosis.wordpress.com
Site Statistics 20th August AM
Just over 72 hours after it’s release, Without a Diagnosis has gone international. But can you help to Paint the World Yellow?
Please share www.withoutadiagnosis.wordpress.com on your blog, facebook, twitter, Pinterest and any other Social Networks that you are involved in.
With a bit of help we CAN get the word out about Undiagnosed Genetic Conditions WORLDWIDE- at least 1 view in every country will Paint the World Yelow!
Flying SWAN Parents!
Yes, its true! Patsy Beverley will be flying through the air in a bid to raise funds for SWAN UK.
Patsy, who is the author of the blog “Half a Decade Old” is doing a sponsored Sky Dive, in Bridlington, on the 14th October to raise funds for children with undiagnosed genetic conditions such as her son Archie.
Archie was born in 2007. He suffers with a range of conditions including delayed development, feeding difficulties and epilepsy. Like many of the families featured in Without a Diagnosis, his parents felt as if they didn’t fit in anywhere- even within the disabled community.
That was, until they found SWAN.
And so Patsy is raising funds for the project that changed all of that. She aims to raise £1,000 to support the children and families that don’t quite “fit in”.
If you would like to sponsor Patsy, to help her acheive that goal, please visit her donation page. Here you will also find more information about her and her motivation to jump out of a plane (!!)
Without A Diagnosis 