25 January, 2012
Save the Date
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20 January, 2012
HRB/MRCG JOINT FUNDING SCHEME
We are very sorry but the closing date for research applications has now passed. Thank you everyone for your interest and submissions.
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16 January, 2012
MRCG/HRB Deadline approaches
If you wish to submit a research project to be considered for funding under the MRCG/HRB Joint Funding scheme, deadline is 20TH JANUARY 2012
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22 December, 2011
THANK YOU EVERYONE!
We are so thrilled to announce that thanks to all of our friends and supporters we have achieved what we felt may be an impossible target at the start of the year - €100,000.
Thank you so much to all of your for your donations, your efforts, your commitment, your courage, your love and your continued support. Without all of you we would not be able to continue to support the research which is giving hope to all of those living with cystinosis.
All of this money will go directly to research - you really are making a difference to people's lives, thank you seems inadequate but we will say it anyway.
GO RAIBH MÍLE MAITH AGAT
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21 December, 2011
Raptor Pharmaceuticals Press Release
Who expect to received FDA approval by end of 2012.
Full Press Release on our home page
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23 November, 2011
2012 M.R.C.G./H.R.B. Joint Funding Scheme
We are delighted to announce this joint funding scheme is now open and ready to receive applications.
Please refer to our Research page for more details.
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13 October, 2011
ONE MILLION EURO!
Cystinosis Foundation Ireland are proud and delighted to announce that we have now funded €1 MILLION worth of research since our inception in 2003!
Thank you to all our supporters, fundraisers, donors and the Health Research Board for making this possible.
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11 October, 2011
Live Streaming of our first Research Symposium
Cystinosis Foundation Ireland are very excited to announce that we have been able to set up a live stream of our inaugural Research Symposium this Thursday, 13th October at 2pm (Irish time).
To access it Click onto http://hdmcu.heanet.ie/ (no login required); select 'Streaming' from the top menu, enter the conference ID 181 and click 'Stream this conference'.
You will need QuickTime software, which is available for free download.
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7 October, 2011
End of Year Celebration
Shelbourne Park - 3rd November 2011:
The cost is €40 for adults and €10 for children (who will get hot food platters – and yes your teens can pass as children!). This event is so popular with our supporters that we now run it twice yearly so come along and join in the fun….you might even win something!
Book your place now by emailing ceoneill@eircom.net or text Eileen O’Neill on 087 2316447 or contact any member of the committee.
Don’t miss out on a great night – book now
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30 September, 2011
Sky Dive Postponed
Tandem Skydive has been put back one week til Sunday 9th October. If you would like to join our group, mail us at mail@cystinosis.ie
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28 September, 2011
IRELAND'S FIRST CYSTINOSIS RESEARCH SYMPOSIUM
Go to our RESEARCH PAGE for details of the Presenters and Titles of Presentations.
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15 September, 2011
The Cyclists have landed!
Thank you so much to the Mayor of the City of Galway, Councillor Hildegarde Naughton for meeting our team and officially launching the coast to coast cycle today. The team head off early Friday morning, heading for the Midlands.
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29 July, 2011
Super Scholar!
 Take a look at our newest little Scholar, Jack McCauley who "graduated" from Tudor Lodge Nursery School in Belfast this summer!
Jack and all his friends in the school took part in a sponsored walk around the school grounds before they finished up for their summer to raise money for some play equipment and cystinosis research. Thank you so much to Mrs. Murdoch and all the staff, children and parents for the wonderful donation of £715!
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26 July, 2011
Good News from Raptor Pharmaceuticals
Delayed-Release Cysteamine Phase 3 Clinical Study Concludes
Raptor has completed its phase 3 clinical study of DR Cysteamine in cystinosis patients, with the last enrolled patients completing the protocol in early June, 2011, reports Ted Daley, President of Raptor Pharmaceutical Corp.
The study, which was conducted at 9 clinical sites in the US and Europe, was designed to compare the efficacy of DR Cysteamine dosed every twelve hours to Cystagon dosed every 6 hours, based on white blood cell cystine measurements. In addition to reducing the dose frequency, DR Cysteamine is designed to reduce side effects that have been associated with cysteamine therapy. Safety and tolerability data was also captured. Data analysis is underway and the company expects to report results shortly.
Patients who completed the phase 3 clinical study were given the opportunity to enroll in a long-term extension study in which they continue to take twice-daily DR Cysteamine. Forty out of 41 patients who completed the phase 3 study elected to enroll in the extension study, and some of these patients have now been treated with DR Cysteamine since August, 2010.
Raptor expects to file for marketing approval in the United States and Europe in early 2012.
July 2011
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4 July, 2011
Happy Independence Day!
Our good friend Anthony Keane undertook a skydive for us in June and was so invigorated by the experience his enthusiasm has encouraged some friends of his to do it too.
The provisional date is 1st October 2011 and if you would like to join them to raise funds for us please contact us at mail@cystinosis.ie. Anthony will be your co-ordinator.
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3 July, 2011
GOOD LUCK BRIAN!
His route is as follows:
Day 1 St Malo to Craon 84 miles
Day 2 Craon to Thouars 63 miles
Day 3 Thouars to Saint-Jean-d'Angely 98 miles
Day 4 Saint-Jean-d'Angely to Bordeaux 83 miles
Day 5 Bordeaux to Castets 90 miles
Day 6 Castets to Biarritz 45 miles
Day 7 The Col du Tourmale 12 miles, 7000ft climb, up to 12% inclines.
If you would like to send him good luck messages you can mail us and we will forward them on: mail@cystinosis.ie
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26 May, 2011
Another Fun Fundraiser
Pictures here soon
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9 May, 2011
Flora Women's Mini Marathon 2011
Please come and join us in this year's Mini Marathon on Bank Holiday Monday, 6th June. The official applications via the Evening Herald and the Mini Marathon office have now closed, but we are happy to have you join us!
Come along after the race to "Davy Byrne's", Duke Street, Dublin 2 and join us for some light refreshments and our annual Team photo!. We will be there from 4pm onwards, looking forward to seeing you all then.
http://www.davybyrnes.com/index.html
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6 April, 2011
Our next night out
 Shelbourne Park, Wednesday 25th May at 7pm. All are welcome to join us in the Oaks Suite for a three course meal, private bar and tote and great view of the track.
Cost is €40 which covers your entry, race card and meal. Bring your children along too, only €5 each.
Contact us at mail@cystinosis.ie if you would like to come along and have some fun in a good cause.
Getting ready for a night out at Shelbourne Park!
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31 March, 2011
Organ Donor Awareness Week 2011
The week long programme of publicity and events to promote organ donor awareness has been launched by Minister for Health Dr. James Reilly and supported by many public figures including RTE's Joe Duffy.
For more details see our home page
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17 March, 2011
Galway to Dublin Cycle
ALL AGES AND ABILITIES WELCOME! 15th-17th Sept 2011
Would you like to join in? Or are you free to volunteer along the route? Can
you sponsor drinks and snacks for the cyclists?
We will be having a finale party on Saturday 17th, details to be announced
nearer the date, please come along and join us.
 
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2 March, 2011
Flora Womens' Mini Marathon 2011
Which takes place on 6th June, Bank Holiday Monday as usual. To run for us please contact us at mail@cystinosis.ie.
You must also officially enter the race either by completing the entry form in the Evening Herald (appears each Wednesday and Saturday) or online to www.florawomensminimarathon.ie
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24 February, 2011
Eighth Annual Golf Classic
Takes place on Friday 3rd June 2011
At Grange Golf Club, Rathfarnham
Why not start the June Bank Holiday weekend off at this golf course which is a challenge for all types of golfer, in the company of new and old friends! You will receive a warm welcome and not be disappointed on your day out.
Tee times are 11.00 – 3.00 and will be allocated on a first come, first served basis. Anyone requiring one of the last tee times must come back to us as soon as possible as they are always in demand but we will do our best to accommodate everyone with their preferred times.
Price per team is €650 which includes four green fees, BBQ and drinks on 10th Tee and dinner for your team. If you would like to bring additional guests for the dinner they are more than welcome and cost is €50 per head.
Dinner will be served from 8.30, followed by prize giving, raffle and auction.
You can download our Fax back entry form here, or ring Andy Maguire on 087 2526502 for more details.
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21 February, 2011
Hertfordshire Fun Day 2011
It will take place again in "The Red Lion", Preston,
Hertfordshire, Saturday 25th June. The
fundraising team's challenge this year is to cycle from Galway to Dublin in September. Any volunteers who would like to join them can contact us.
Or if you would like to volunteer your services at the Fun Day or can offer any prizes, please also contact us on mail@cystinosis.ie
Thanks
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14 January, 2011
2011 RESEARCH CALL ANNOUNCED
Full details on our Research page
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22 December, 2010
New Publication
Read more about the PEGylated derivatives of cystamine as enhanced treatments for nephropathic cystinosis
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6 December, 2010
Many Thanks
We want to sincerely thank Christy O'Neill for all the work he has put into getting this calendar to this stage. It was his idea initially and he put in all the legwork and research into getting a calendar produced. He also held meetings with the F.A.I. and secured their co-operation.
Thank you also to Aidan Cullen for all of his design work. He and Christy collaborated and spent many long hours tinkering with the draft and then final copy of the calendar. We are sure you will agree it was a job well done!
You can buy the calendar in some branches of Elverys and Carroll's Gift Stores or via our website, fundraising page.
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30 November, 2010
Thank you for your votes
Thank you everyone who voted for our Charity hero, Mick Swift. Unfortunately we did not make the shortlist this time - better luck next time!
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8 November, 2010
We want your votes!
The Better Together campaign is an initiative of The Wheel, a national support and representative body for community, voluntary and charitable organisations. The campaign is brought to you by EBS and is supported by Intel, Today FM and The Irish Examiner.
The purpose of the Charity Hero competition is to highlight the extraordinary work being done by people, on a voluntary basis, across Irish society. The competition invites people to nominate a person who has made an outstanding contribution in this crucial area.
The nomination process opened on 13 October and will remain open until 15 November. People will also be able to vote for the various nominees during this time (voting closes at 5.30pm on 15 November).
At that point the 10 entries with the most votes will be shortlisted and the final winner will then be selected from a panel of judges. The winner – and Irish Charity Hero – will be announced at a ceremony in Dublin on 25 November.
The overall winner - and Irish Charity Hero - will be awarded €1,000 for their favourite cause!
How to Vote
You must be a registered Facebook user to vote in the Better Together - Irish Charity Hero competition. Once logged in, simply go to the web address below and click through to the Voting tab of the competition page and click on the name of your Irish Charity Hero and that's it!
View the competition on Facebook now: http://www.facebook.com/bettertogethercampaign
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1 November, 2010
Well Done Will!
Thank you so much Will for raising €1,500 for cystinosis research!
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8 October, 2010
Our Calendar is Launched! See Fundraising Page for further details
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2 September, 2010
Cure Cystinosis International Registry Launched
A partnership between the Cystinosis Research Foundation and the Cystinosis Foundation (USA), along with a collaboration of 12 advocate foundations from around the world, has launched the first global cystinosis patient registry. The registry's goal is to connect patients with researchers and others developing potential new treatments and a cure for cystinosis.
Read more
Register here for those people living with Cystinosis:
https://cystinosis.patient
crossroads.org/
Researchers, Clinicians etc register here:
http://cystinosis.research
crossroads.org/
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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 €1,400 - 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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