We very much appreciate everyone's support and without it we would not be able to fund the high tech and world respected research that we do. We often get asked how people may make donations:
1. Should you wish to donate online you may do so here
or sponsor someone taking part in an event on our behalf you may do so here
2. We have also been asked by a number of people if they can make regular
donations to Cystinosis Foundation Ireland. If you would like to do this
please print off the following mandate form, fill in your details and forward
to your bank. Standing Order Mandate
We would ask you to email us at mail@cystinosis.ie when you have done this
to enable our Treasurer keep track of payments coming into the account.
3. You may post donations to us at: 1 Terenure Place, Terenure, Dublin 6W
If you are taking part in a Fundraising event on our behalf and would like to give some information to your sponsors, you can download and print off our compact information leaflets. Just print them back to back and you have three leaflets to a page. Alternatively, contact us at mail@cystinosis.ie and we will be glad to send them out to you.
WELL DONE to all our Santas who completed their Dash on 11th December!
Congratulations to John Tuite who recently completed his first Marathon in 4 hours 35 minutes. A marvellous achievement and thank you so much John, who raised a
whopping €2,500 for Cystinosis research!
The Galway-Dublin Cycle took place 16/17 Sept. 2011. The Mayor Galway City and County, Councillor Hildegarde Naughton seen here officially starting the race with some of the competitors.
This group also organise the Fun Day in Preston and combined with their fundraising efforts that day have raised €10,000!
The Group Co-ordinator, Gary Pemberton summed up the event very concisely:
6 - months ago, a plan was hatched
7 - cyclists would ride from Galway to Dublin
3 - days riding quickly became 2
5 - vats of 'Butt Cream" was shipped ahead into Galway
8, 9, 10, 11 - the team grew and grew until we got the top team formed
2 - the support drivers who carried us through
11 - the number of towns that we stopped in
16 (at least!!) - the number of pubs we drank in
????? ( who knows?) - the number of pints of guinness we drank!
9 - the amount of trays of sandwiches we ate our way through
5, 3, 4, 2 - the beat that Ray sang to in Moate
6 - points scored by Australia
15 - points scored by Ireland
2 - punctures obtained
1 - controlled graceful crash
11 - sore bums
..and more importantly
Countless - the amount of people who helped, supported, contributed along the way
132 - miles cycled
10,000 - Euros raised
1 - fantastic team!! "
Well said Gary! For more Photos
RSA CHALLENGE...
Andy Dowd, Malcom Craig, Declan Tobin, Stephen Kinney and Des Hennelly recently participated in the RSA Insurance Arctic Challenge. Over 10,000 of RSA's staff members across the world competed in 5 person teams to record the highest number of steps on personal pedometers over an 8 week period. The prize for the winning team was a trip to the Arctic.
The 5 guys, operating under the oxy-moronic team name "The Arctic Penguins", achieved an average of over 20,000 steps each per day over the 8 weeks, including a 5 hour, 26 km walk around Dublin bay from Monkstown to Sutton Cross, In case 
you feel like checking the distance, the 26 km included a
bizarre sat-nav guided 40 minute detour around Dublin port.
When you have seen one storage tank, you have seen them all!
After the 8 weeks the lads finished a very creditable 23rd out of over 2,000 teams and in 1st place in Ireland. Their local prize was a €1,000 donation to a charity of their choice and they chose Cystinosis Foundation Ireland. Thanks guys!
Brian completed the Tourmalet 500, a trek he described as "horrid and vile" in parts! He raised €1,406 for cystinosis research and here are a few words from him:
"Hi Everyone, recovery now complete & I would like to thank everyone for their best wishes and generosity. I have raised €1,406. Thank you all those associated with Cystinosis for their support. I am delighted to have done it, this isn't the last you have heard from me as I would love to do a another event to help Cystinosis. Best wishes to those doing the Galway – Dublin cycle, just enjoy it. Take care, Brian".
Thank you ONCE AGAIN to the lovely villagers of Preston, nr. Hitchin and hosts of "The Red Lion", Ray and Jo Lambe for a wonderful day on 26th June. We had all the ingredients to enjoy a wonderful day in the sun...tombola, the Gift Tree, bouncing castle, a village Treasure Hunt, all day BBQ and Paella, cake and sweet stall, live music and of course, Elvis!
As well as Ray and Jo and all the lovely customers, thank you so much to Tracy and Gary, Julie and John and all the dedicated team of helpers who were there all day long. Thank you also to the children of the Preston village school who had a non-uniform day on the day before our Fun Day and each paid £1 for the privilege. They presented Ray and Jo with £100 which was raised from that to go towards our event.
The day raised €3,992 - not bad for a day's work! (Jo, Tracy & Co, we know there was a lot more than one day's work in it!).
We are already looking forward to next year, maybe you will join us when you have a look at this year's!
And they are not finished there, this group are also coming over to Ireland in September to cycle from Galway to Dublin to raise more funds (see below).
Thank you so much to all the lovely ladies who took part in this year's Mini Marathon for us and a very special thanks to SPONGE BOB SQUAREPANTS who made a very special guest appearance! Take a look!
EIGHTH ANNUAL CYSTINOSIS GOLF CLASSIC
Took place on Friday 3rd June 2011 a
t Grange Golf Club, Rathfarnham and we started off the June Bank Holiday weekend with another scorching day, the norm for our Golf date.
Last year's winners retained their title - Mick Holly & John Hoey led the team which won with 86 points. They are going for their hatrick next year!
The evening was topped off with a wonderful meal, followed by raffle and auction. Thanks to our lively auctioneer, Alan Lewis, all the lots sold and yielded €6,400. The prize lot of the night was the framed Lionel Messi Barcelona jersey which was also dedicated "To my Irish fans". This was sold for €1,500 after some tense bidding. The night raised €26,500 which was a staggering amount and one of our best ever.
Thank you again to everyone who played on the day, sponsored tee boxes or prizes or who just came along and joined us for dinner, we appreciate your effort and your company. See you again next June! Photos here of a lovely day
May 26th 2011 was another fun night at Shelbourne Park which raised €2,850.
More Photos
We were very pleased to have a group take part in the recent Great Ireland Run in the Phoenix Park, Dublin on Sunday 10th April.
Thank you so much Ann-Marie, Meabh, Galia, Kieran, Anthony, John and Keith who struggled through the pain barrier to raise funds for cystinosis research!
Galway to Dublin Cycle
ALL AGES AND ABILITIES WELCOME! 16th & 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.
THANK YOU EVERYONE who bought our calendar, which ran from October 2010 to December 2011.
2010 Preston Fundraiser was great fun once again....
Read more
A massive €3,968 was raised on the day alone. Thanks to Gerry Dunne for doing a solo sponsored walk which was included in this total. THANK YOU PRESTON!
Photos of the Day
Our Seventh Annual Golf Classic took place at Grange Golf Club, Rathfarnham on Friday 4th June 2010.
Read more here & Photos
The family and friends of Jack McCauley took part in the 2010 Belfast City Marathon on Monday 3rd May 2010 to raise funds for Cystinosis research. Fifteen of them took part in relays - and fifteen members, Teams Cystinosis A, Cystinosis B and Cystinosis C all finished. Their official time was 5 hours 34 minutes. Well done everyone.
Not only did they have the satisfaction of the personal achievement of completing a Marathon, they also raised the amazing sum of €3,220.
Very special thanks to the team members:
Adrian Hughes, Nicola Hughes, Leigh Keyes, Roger King, Gillian McCauley, William McCauley, William McCauley Snr., Amanda McDonald, Chris McDonald, Natasha McDonald, Mark Parr, Andrea Trainor, Catherine Trainor, Conor Trainor, Liam Trainor, Samantha Waite
Some photos of the day here
THE SHAVE finally took place on 1st April 2010, also at Shelbourne Park!
Stephen braved the blade during our Night Out at Shelbourne Park. He was brave enough to let his wife, Carole shave him. However, the nerves were starting to kick in by the time she produced the cut-throat razor so a certain amount of Dutch Courage was needed before she could start.
It as all worth it though, he raised the amazing amount of €1,966 - coincidentally 1966 was the year he was born - and the last
year he did not have a moustache! He asked us to pass on his thanks to all who sponsored him, and a special thanks to Susan Wilkes for all her effort on his behalf.
Update: Stephen has received another donation of €50, so his grand total stands at €2,016 - a staggering amount.
More photos here
We had another great night at Shelbourne Park, 1st April 2010, which raised over €4,300. Thank you everyone who came along and also those who could not attend but bought Dogs. Take a look!
4th July 2009 saw the culmination of our most challenging fundraisers yet. Seven weary men arrived at the Red Lion, Preston after walking 100 miles in three days. They had been joined on the last day by three more weary travellers who stepped out the last 33 miles with them.
Read Gary Pemberton's own account of the three day torture!
More Pictures of this great achievement
On the same day the waters of the Salthill prom were getting pounded in aid of Cystinosis too.
Read Ann's Story here
L-R: Unknown swimmer, Shannon Ortiz-Lynch, Ann
Brehony
DISCO DIVAS of all ages enjoyed our First Ladies Night on 23rd October 2009.
We would like to thank the following sponsors for their generous support of our first Ladies Night:
Beads & Bling, Temple Bar * Bewley's Hotel, Ballsbridge * Butlers Chocolates, Dublin 17 * Cineworld Cinemas, Dublin 1 * Fitzgerald's Woodlands House Hotel, Adare * Handmade Christmas Cards, Linda Gray * Henparty.ie * HouseandHome.ie * J.F.H. International Ltd., Glasnevin * ProDJ's.ie * Revas Spa & Hair Gallery, Adare * Sister Sister Accessories *