Cure Aniridia

Shine the light on Aniridia

 
Press Release
The FQDT Ride again - the Ultimate Prudential Ride London 100 August 2015 PDF Print E-mail
Friday, 22 May 2015 12:32

Despite the horrendous rain and weather last year which saw tragedy and success in the race - the FQDT have taken it on again to push the limits and surpass their previous rides.

 Godfather Rich and Dad James meeting legendary Dan Boardman after the event

http://www.islingtongazette.co.uk/news/pink_pedallers_beat_hurricane_bertha_to_raise_12_000_for_finsbury_eye_charity_1_3730662

The truly amazing 2014 FQDT Team!!!!!!!

We wish them ALL the best and thank them for the selfless support towards the critical Aniridia Research at Moorfields Eye Hospital in London.

One day we hope this will enable Ella to have some useful vision again, and protect her eye health until then.

Please show your support for these wonderful people in the FQDT 2015!!!

 

 

 
Racing to support the Fairy Queen from Espana....Barcelona Marathon PDF Print E-mail
Friday, 15 May 2015 00:00

Back in March of this year I set foot on a marathon start line.  That in itself was an amazing feat for me, something that just one year before I would never have even dreamt of.  I was overweight, unfit and stressed. In February 2014 I decided that I needed to start running (pushed out of the door by my wife who was bearing the brunt of most of my stress!).  Running was the obvious answer to these three problems.  I started running on my own, 5 kilometers here, 5 kilometers there, and I soon realized that I was actually enjoying it!!  I was able to do the same route but each time I did it I was going faster, and suffering less!!  Maybe this was my answer to all my problems.  Then came the big test, a whole 10km!!  All I wanted to do was to finish, and in less than an hour if possible!  I stood on the line feeling alone yet surrounded by 24.000 people. “Surely this can’t be so hard” was my thought, and 57:11 minutes later I crossed the line! Euphoria set in. And so did the bug!  I began signing up for 10km races left, right and centre, running and running. It was great.

My stress came down, my weight too and I was getting fit.  I would even go so far as to say fitter than I ever was at school, where I played football, squash and swam at a high level!!  This was good, but I wasn’t sure I was doing it right.  I took the next step and joined some other crazy runners who went out regularly with an ex professional turned shop owner.  Now that was a good idea!!! Motivation from others, advice from people in the know and shared ideas.  Times went tumbling and the fun went up!

In September the distance went up and I did my first ever half marathon.  Again, the target was to finish, if possible under 2 hours.  1 hour 57 minutes later I had crossed the line, this time with tears in my eyes.  That was amazing, “who would have thought that I could run 21km non stop??!!

December came and people started turning their attentions to targets for 2015.  “Barcelona Marathon” “Barcelona Marathon” “Barcelona Marathon” “Barcelona Marathon” The words kept appearing and I couldn’t stop thinking how crazy these people were.  And that was my line of thought, for approximately 2 weeks, then I thought, “Well, why not me too?” and I duly decided to sign up.  Here in Barcelona there is not the same idea as in London, where most of the runners are sponsored, it is simply pay and sign up.

I’ve been living in Barcelona since 1998 but that has not stopped me from thinking like the Brit that I am. I contacted Elly and asked if it would be OK to race to raise money for Shine the Light on Aniridia, and in no time at all I had my Just Giving page set up and running. I have known James and Elly for years now, and Ella since she was born.  Such an amazing fighter deserved some support and I wanted to do the best that I could for her.  We proudly gave her the first pair of sunglasses, and I wanted to help some more. This was the best that I could do.

There then followed 12 weeks of solid training, doing up to and sometimes over 100km a week, with a long run every weekend of 2 hours.  It was not easy, it was cold, sometimes wet, and on many occasions busy with that previously stressful job I have!! Half marathons came and went, times faster and faster, legs stronger and stronger.  And all the time posting statuses on my facebook page reminding my friends and colleagues to sponsor me.  50€, 100€, 200€.  The total was going up as was my strength.  All was looking good.

Finally the big day arrived, Sunday 15th March. There I was, all trained up, and with a buzz in my body that I had never experienced before.  I had read lots about marathons, watched videos, talked non-stop for weeks with anyone who was willing to listen. But nothing could prepare me for that moment I crossed over the start line.  26 miles lay ahead of me, running around the city of Barcelona that has been my home for the last 17 years.  I had never seen it like this before, and to be honest I don’t think I saw that much of it.  It was head down, one foot in front of the other and go for it.

To cut a long story short, 3 hours 44 minutes and 1 second long to be exact, I crossed the line.  I had been expecting to cry from the emotion of finishing a marathon to be honest, but amazingly they stayed back and it was smiles all round.  I had done it.  And I had managed to exceed my sponsorship target of 500€ by 130%.  Brilliant support from my family and friends from England, but also from those in Spain who were not really familiar with the whole sponsorship process.  Usually it was accompanied by the question “why should I pay for you to do the race?”  It took a few laughs and minutes of explanation. 

It was a great experience and one that will be certainly repeated next year.  13th March is already booked up in my calendar!!

I recommend running to all of you. I recommend helping a great cause even more.  Go for it! I even lost 16kg!!

 

 
FQDT Part II PDF Print E-mail
Monday, 16 June 2014 12:51

THE Fairy Queen Dream Team rides again......for the second year running the amazing cycling dream team rides the Ride London 100 event - 100 miles through Surrey and on some tough inclines with those Surrey Downs hills...

This year the team is 20 strong with men and women pitting their strength and support towards raising funds critical to keep up the work at Moorfield's Eye Hospital and to support the Fairy Queen and those in her shoes. Not withstanding their dashing pink inspired cycling outfits....

Last year the team raised £8,000 and donated £1,000 to ANUK who support and help families in the UK and abroad affected by Aniridia.

A Day In Ella's Shoes

Imagine if you had to spend the day without your irises - those coloured things you maybe take for granted that provide you with much needed protection. Imagine if your eyes hadn't developed correctly and even without your irises your fovea and optic nerve didn't send the right messages to your brain and so what you 'saw' and what it 'was' were maybe 2 different things....and then the next thing and the next. You'd get tired right? You'd get stressed right? Would you have the patience to stay calm, carry on and work through it? Would you get annoyed that things weren't accessible 'now, yesterday' and your technology had to be adapted and it might take you double the time to do something?

How a relatively 'unsunny' day can cause you severe headache and you can't stand to open your eyes most of the time outside as its a bit like having a spotlight shone in your face. Imagine having little or no depth perception - not being able to judge how far things are from you, where the stairs are, where the wall ends and the door starts. Imagine bumping into things and not feeling confident enough to run freely and know which way you're going and not have to worry. 

Imagine relying on those around you for navigation of the smallest place/thing unless you have learned and added to that large library in your head that categorizes and remembers everything and every detail you felt/smelt or needed for next time - if people haven't moved items and changed everything so you just have to learn it all over again. Imagine the panic and anxiety you might face from the world on a daily basis and how the smallest silly things we 'sighted' people take for granted can be so hard and scary to those like Ella.

Imagine always worrying about eye pressure, loss of sight, changes in vision and operations and eye drops and generally being poked about.

It's probably great you only have to imagine. She has to live with this and she does with courage and bravery and guts and determination even after her recent bilateral retinal detachment. Yep, maybe you would have wobbled at that too.

With such a rare and small presence, yet the effects felt just as much by those families and individuals involved as they sometimes struggle in our completely 'visual' world, we are thrilled to be able to support work towards this eye condition and towards the safeguarding of their sight for years to come. So get your pennies out and send them over to the FQDT - they're going to do the ride of their lives for this little special girl and they need your support!

Thank you

 

 
The Fairy Queen Dream Team RideLondon100 2013 PDF Print E-mail
Tuesday, 23 April 2013 08:39

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.....

www.justgiving.com/aniridia

Thank you!!

 

 
Can Do Martial Arts are Champions for the Campaign... PDF Print E-mail
Tuesday, 28 February 2012 14:09

'Last Sunday we held our annual Junior Championships in which 80 of our students aged from 5 years to 14 years competed against each other in three categories: Kata, Kumite and Ground Fighting.

It was great to see so many students having a go and showing such lovely spirit, I hope everyone had a good day. A massive thank you to all the instructors / senior grade students who helped out on the day. We managed to raise an impressive £450 for the charity – the Moorfields Eye Hospital, well done and thank you!'

Sensei Virginia Richardson, CDMA

http://www.candomartialarts.co.uk/ - Welcome to Can Do Martial Arts®. The only Karate and Combined Martial Arts Academy in Oxfordshire. Train with the best martial artists available who are fully qualified as well as experienced instructors and competitors. Can Do Martial Arts promotes strong family values including respect, responsibility, self control and discipline as well as goal setting and achievement skills. These values are incorporated into all our classes.

 
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