4 March, 2010
Enjoy a night out with us
Our third Night Out at the Dogs will be held once again in Shelbourne Park on Thursday 1st April 2010. This is Easter weekend and we hope lots of you will be able to attend.
Families are welcome and full details will be available here shortly.
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3 March, 2010
Enter this year's Flora Ladies Mini Marathon
Entry forms now available in the Evening Herald or online 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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15 February, 2010
PLEASE VOTE NOW!
Cystinosis Foundation Ireland has been shortlisted for an award in the AIB Better Ireland Programme. This community based programme will award the group which receives the most votes from the community.
Voting is now open. You can vote two ways:
To vote by text: Text TERENURE followed by a space, followed by A to 51303 (standard SMS rates apply).
To vote online: Click on www.betterireland.ie, select Terenure branch and choose A - Cystinosis Foundation Ireland.
You can vote as often as you like, but if voting online not more often than once every 24 hours.
Voting closes on 15th March 2010 and we could then be awarded either €5,000, €3,000 or €2,000.
Thanks for your support
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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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14 January, 2010
Cystinosis Foundation Ireland shortlisted for award
1,276 community groups from all over Ireland applied to AIB's Better Ireland Programme. We are very happy that we have made the shortlist, as proposed by AIB, Terenure.
There are three awards available: 1st place €5,000, 2nd place €3,000 and 3rd place €2,000.
A public text and online vote will be open from 15th February - 15th March.
Details on how to vote are above.
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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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