It's been a while since we posted - sorry to all our followers! Life has been busy but Ella is doing very well and had good news about her eyes recently with pressure being an all time low.
We have a fantastic event coming up in August this year.....The RideLondon100 event has been taken on by The Fairy Queen Dream Team:
Ella's Dad, James plus her godfather Richard Gribbin, Samuel Sweet, Taner Dedezade, Ben Sayles, Jordan Quick, Josef Quick, Simon Freer, Simon Giles and Henri Black will head up the event and cycle 100 miles to raise money for the 'Project Fairy Queen' Aniridia Research being conducted at Moorfields Eye Hospital in London under Dr Julie Daniels.
Sunday 4 August 2013
Celebrating the legacy for cycling created by the London 2012 Olympic and Paralympic Games, Prudential RideLondon-Surrey 100 will start in the new Queen Elizabeth Olympic Park, then follow a 100-mile route on closed roads through the capital and into Surrey’s stunning countryside. With leg-testing climbs and a route recently made famous by the world’s best cyclists, it will be a truly spectacular event for all involved.
Shine the Light on Aniridia Research
Professor Julie Daniels has given us this update.....
'The previous funds raised are being used solely to support the salary of Dr Victoria Tovell, a post-doctoral research scientist working with Prof Julie Daniels. 'Project Fairy Queen' is now entering a new phase whereby we are trying to make healthy cells, isolated from normal donor corneas, behave like the diseased cells in Aniridia so that we may study them in the laboratory. To do this we need to silence the activity of the Pax6 gene and this requires expensive molecular biology laboratory reagents. If successful, this work will contribute to our understanding of the significance of Pax6 in the support of normal stem cell activity in the cornea and hopefully provide therapeutic targets to maintain stem cell activity for longer in patients with aniridia-related keratopathy (ARK). One of the fundamental goals of this current research phase is to generate sufficient data with which to apply to the Medical Research Council for a 3 year project grant to support our Aniridia research.'
Aniridia Network UK
£1000 of the funds raised will also be donated to Aniridia Network UK. ANUK have supported us as a family like many others with their tireless and selfless work on behalf of those with Aniridia and families supporting those with Aniridia.
'Aniridia Network UK is a support group and charity for people affected by Aniridia: those who have it plus their family, carers, doctors and educator and other support givers. We want all these people to be hopeful, confident, supported and well informed regarding Aniridia. Since formation in 2000 our entirely unpaid team of trustees and volunteers has consisted mainly of people with Aniridia and their parents. Our funding comes entirely from donations.' www.aniridia.org.uk
If you would like to support this event please visit the Team's Just Giving page.....