26 August, 2010
Dublin Airport Taxi Drivers get moving for Cystinosis
Forty-eight players took part in a soccer tournament at Home Farm F.C. to raise money and also awareness of Cystinosis. It was a beautiful sunny evening and was a most enjoyable workout for all. Unfortunately one of the players, Mark Crowley was injured and had to be treated in hospital, we send him our very best wishes and hope he recovers quickly.
Following the soccer, the players and some friends relaxed their bodies but taxed their brains with a table quiz which was won by the PoxyMorons! To celebrate their win a karaoke session followed which everyone heartily took part in, hosted by MC Chris.
As part of their fundraising the drivers also left 2nd hand books in their canteen and everyone was invited to take one and make a €1 donation per book; this raised €80 in two weeks.
The total raised was €1,385, a huge amount for one night.
We wish to thank Ann Tuite and her trusty Treasurer Jackie, also Martin and all the wonderful drivers who took part on our behalf.
We would like to thank all these wonderfully warm and generous people, who constantly raise money for charity and allocate it to different charities at different times. We were delighted to be picked by them at this time but also to be able to meet such a lovely bunch of people, it was a truly heartwarming experience. Thank you all.
We hope to have some photos up here soon
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14 August, 2010
Hannon wins Medal!
James Hannon won a Silver medal in the category of Petanque - Mens Doubles at the games held this year in Dublin 8-15 August.
The Irish Kidney Association hosted the Games for the first time and have enjoyed welcoming over 400 participants representing 24 countries. They all celebrated NEW life through sport as all of the competitors were either transplant recipients (kidney, liver, heart, lungs, pancreas, bone marrow) or were on dialysis. They used the event to promote organ donor awareness.
For More Information:
http://www.2010Newlife.com
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1 August, 2010
Great Day and Evening in Preston
Full report and photos here shortly
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12 July, 2010
We launch our Facebook Page
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28 June, 2010
McCauley Family Total - €3,220!
We would like to thank all the members of the Team Cystinosis who completed the Belfast Marathon on May Bank Holiday Monday:
Gillian McCauley
William McCauley
William McCauley Snr.
Mark Parr
Adrian Hughes
Natasha McDonald
Amanda McDonald
Chris McDonald
Leigh Keyes
Andrea Trainor
Conor Trainor
Liam Trainor
Catherine Trainor
Samantha Waite
Nicola Hughes
Roger King
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5 June, 2010
Golf Day a great success
21 teams competed in glorious sunshine. Full report and photos on our Fundraising Page.
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25 May, 2010
Hertfordshire Fun Day
Keep the date free! More details of the great community event based at "The Red Lion", Preston, coming soon
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20 May, 2010
"Donate Now" goes live
We very much appreciate that all the research we fund would not be possible without our generous supporters and donors.
We now have the facility to accept credit/debit card donations via our website. Simply press the "Donate Now" button on any page and follow the instructions. Or you can go straight to our Fundraising Page and click the link there.
All donations will be acknowledged by email.
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3 May, 2010
Team Cystinosis completes Belfast Marathon
For some of them it was their first experience of running, never mind a marathon!
Cystinosis Teams A, B and C finished at 5 hours 34 minutes and felt sore but very satisfied when it was all over.
Photos of the day on our Fundraising Page.
WELL DONE EVERYONE!
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2 April, 2010
The Big Shave Happens!
The big shave finally took place at our Night Out at Shelbourne Park Race Track. Photos and update on money raised will be here soon
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22 March, 2010
AIB RESULT
We want to thank everyone of you for your votes which meant we will awarded €3,000 as part of their Better Ireland programme.
This money will go directly to Cystinosis research.
THANK YOU EVERYONE!
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5 March, 2010
Wellie Race Donation received
The 30th Wellington Race took place on New Year's Day in the hills around Castlecomer, Co. Kilkenny. What started as some fun back in 1978 has now raised approximately €350,000 for a wide range of local, national and international charities. Have a look at their work on www.wellierace.com
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3 March, 2010
Enter this year's Flora Ladies Mini Marathon
Details of the race at www.womensminimarathon.ie If you are going to enter the race on our behalf please also let us know at mail@cystinosis.ie
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2 March, 2010
Seventh Annual Cystinosis Golf Classic details announced
Full Details
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5 February, 2010
Stephen's Big Shave!
Stephen McDonald, Godfather to Ciara Maguire, has decided to shave off his moustache for charity. No-one (not even Stephen's mother!) can remember him without it! For 200 crisp €5 notes he will go naked!
If you would like to sponsor him you can do so by clicking on this secure link:
http://www.mycharity.ie/event/stephens_big_shave/
We will keep you updated of when and where the big event will take place!
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11 January, 2010
Exciting News from Raptor Pharmaceuticals
Raptor Pharmaceuticals, under Ranjan Dohil, M.D., Professor of Paediatrics at the University of California, San Diego are endeavouring to produce a delayed-release enteric coating formulation of cysteamine bitartrate, which will only need to be taken twice daily, every twelve hours. All patients with Cystinosis currently take Cystagon four times a day, every six hours. This is very excitiing news for all those with Cystinosis, please read
Full Press Release here.
An extremely important point made in the release was that during the first quarter of 2010, Raptor plans to meet with the Food and Drug Administration ("FDA") and European Medicines Agency ("EMEA") to discuss plans for a repeat-dose, pivotal, Phase 3 clinical trial in cystinosis patients. Upon receiving FDA and EMEA agreements on protocol, Raptor intends to initiate its Phase 3 clinical trial at multiple sites in the US and Europe.
An extract of the study to be published in the Journal of Pediatrics here
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7 January, 2010
Happy New Year!
We thank you for your patience while our new site has been developed. We had some teething problems along the way and we see it as a work in progress as we hope to be constantly improving and updating it. Please come back to us with your comments, ideas, news items, we would be glad to hear all your views.
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16 November, 2009
Sixth International Cystinosis Conference date confirmed
More Information on our "Conferences" page
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10 November, 2009
London Fun Day Total Revealed
€13,000 was raised during this feat of endurance. Full Story of this marvellous event on our Fundraising page.
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22 October, 2009
Disco Divas Raise Money!
Check out our Fundraising page for Photos of our First Ladies Night which took place in the beautiful Thomas Prior Room at Bewley's Hotel, Ballsbridge on 22nd October.
A group of enthusiastic volunteers devised a novel and enjoyable way of fundraising by holding a Mamma Mia themed night, where all Disco Divas were invited along to the elegant setting of the Thomas Prior room at Bewley’s Hotel, Ballsbridge.
It was a girly night out with a difference – there was great music, good food and wine, shopping, great company and of course Chocolates! We hope this will be an annual event after this inaugural night raised €700. Thanks to Eileen, Cathy, Linda and Mary for their innovation!
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18 August, 2009
James Hannon takes on the World
James took part in the life-affirming games, where, between them, the Irish team members have 13 new kidneys, five new livers and one new kidney-pancreas.
The squad travelled to Gold Coast, Australia, on Tuesday, August 18th. This was James’ fifth time to compete for Ireland, and he has previously brought home gold, silver and bronze medals from World and European Games. He was joined at the Games by his parents Martin and Teresa.
James excelled at lawn bowls and between them the 19 member team brought home 22 medals.
You can read more about these games and James' success in our Newsletter.
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