What's Carbon Deputy Jace Marietti Doing now
Cockayne Syndrome (CS) is characterized by developmental abnormalities and photodermatosis causing a child's cells to be continually damaged by UV light. And once they are damaged, those affected lack the ability to repair their cellular genetics.
Price Sun Advocate - Thu, 14 Aug 2014 09:48

Half marathon runner aims to raise awareness
The Running for Thomas Laurie campaign, set up by family friend Ewan Gordon in 2012, raises money for charities dedicated to supporting families affected by Cockayne Syndrome. Next year Mr Gordon will run from John O'Groats to Lands End dressed as ...
Bicester Advertiser - Sat, 13 Sep 2014 09:07



WSU researchers find crucial step in DNA repair
Smerdon and his colleagues also study Cockayne Syndrome, a TCR deficiency disease that causes extreme sun sensitivity, nervous system degeneration and premature aging. Other DNA repair deficits can cause a range of diseases such as leukemia, ...
Science Codex - Mon, 18 Aug 2014 11:56



Duo to run half-marathon in memory of Thomas
In 2012, Ewan set up a campaign called Running for Thomas Laurie, which aims to raise awareness of Cockayne Syndrome. Thomas died from the rare premature ageing disorder in February this year. Ewan, who is a close friend of Thomas' parents, ...
Buckingham Advertiser - Fri, 12 Sep 2014 08:45

Ella's dreams come true as she swims with dolphins in Australia
Southview School pupil Ella Barden, who was born with Cockayne syndrome, herself raised £406 to go on the trip by completing a 400-yard sponsored walk through Witham's Grove shopping centre - a major challenge for the girl, who has a life expectancy of ...
Braintree and Witham Times - Mon, 08 Sep 2014 09:07



How brotherly love helped raise £3k for hospice
The nine-year-old suffered from a rare genetic condition called Cockayne Syndrome, a disease that causes premature aging, that affects two in every million newborns. Ellie and her canoeing friends covered around 15k a day, paddling for up to eight ...
Bicester Advertiser - Wed, 13 Aug 2014 22:44



Orpington girl 'constantly smiling' despite suffering from rare genetic disease
Late last year, 18-month-old Orpington girl Freya Huckstepp was diagnosed with Cockayne Syndrome (CS) - a rare genetic disease characterised by premature ageing. Despite this, she is an amazingly happy child, described as "constantly smiling" - even in ...
This is Local London - Tue, 12 Aug 2014 03:10


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Last update: September 2014