Thanks to all the lovely ladies who once again were a part of Team Cystinosis in the Flora Women's Mini Marathon.
11th Annual Golf Day, 30th May 2014:
This year saw our Eleventh annual Golf Classic, which once again was our year’s largest fundraiser raising over €20,000 for cystinosis research.
It was once again played on the magnificent Grange course in Rathfarnham, which is the home course of the victorious Ryder Cup Captain Paul McGinley. Thirty teams took part, many of them have been with us since the first year, but we are also glad to report there were some newcomers who have assured us they will be back next year.
As usual, the sun shone and everyone enjoyed the beers and barbeque on the 9th. This year was also the 2nd time a shotgun start was used which meant that everyone’s finish time was not as staggered in years gone by enabling everyone to discuss missed putts, enjoy the sun and more beers at the 18th green!
John Hoey was our Auctioneer this year and the bidding was pacey, with some great lots such as two tickets for Court No. 1 at Wimbledon, green fees from some of the premier courses in Ireland and the latest in laptop technology. And as in previous years, all team and raffle prizes as well as the excellent auction offers were once again sponsored by our many generous supporters.
So thank you to the eams who took part, those who advertised at our tee boxes and those who sponsored the prizes, every one of you are really making a difference.
Very special thanks to Damien Kieran Super Valu, Ray Shevlin Centra who have sponsored our Barbeque and Goodie bags each year.
Take a look
The lovely people at Purcell Masterson, Ormonde Street, Kilkenny held a coffee morning on 21st June 2014 which raised over €600 for cystinosis research. Thank you so much to them and the local business who supported it, also to the Sue Nunn show on KCLR FM who interviewed one of our executive members and Purcell Masterson's Bridget O'Dea about life
with cystinosis and the work we do.
Gary survived the Herts Blue Light Fight Night, 16.11.13! Well done Gary we are so proud of you, in the process of getting bashed you raised €1,267 for cystinosis research! THANK YOU!
Well done and thank you to the Iron Ladies Golf Society who held their Charity Golf Day on 9th October; this year's chosen charity is Cystinosis Ireland and it raised €2,020 for cystinosis research.
Many thanks ladies! www.ironladiesgolfsociety.com
Catherine Horgan, Thanks to Mary, Annette & Linda
Winner on the Day
RUNAMUCK OCTOBER 2013 raised €3,687.50 for Cystinosis research - well worth getting cold, wet and muddy for. Thank you to our Dirty (Baker's) Dozen!
To mark our Tenth Anniversary would you like to be one of our €100 by 100 team? We are looking to recruit 100 people to raise €100 each by 31st December 2013. More details here
To kick off the "€100 by 100" we have been donated a treasure trove for coin collectors...details of how you can bid for these here.
FINAL BID RECEIVED: €150 - Thanks to all who took part in the bidding!
WELL DONE Eibhlis, Brid and Martina who successfully completed the Limerick Half Marathon 5th May 2013.
They can't wait to do a full Marathon now they say!
And most importantly, thank you so much for raising
€1,500 for cystinosis research.
RUNAMUCK 9TH MARCH 2013 - World Premiere of the film you have all been waiting for is here! Visit our Facebook page and give yourself a treat!
Thank you so much to Rachael Reilly who recruited Dylan Power, Johnny Conway and Andy Maguire to join her and get down and dirty in aid of cystinosis research. Take a look at pictures of their ordeal.
THE THIRD POLICEMAN - Pavilion Theatre, Dun Laoghaire 7th February 2013
As our patron, Stephen Rea kindly staged this musical spoken word presentation of Flann O’Brien’s “The Third Policeman”, with all proceeds going to cystinosis research. The music was composed by Colin Reid, who accompanied on piano. Neil Martin (Cello), Becky Jostin (Cello) and Niamh Crowley (Violin) all appeared on the night and very generously donated their time and talent.
“The Third Policeman” is described as a murder thriller, a black comic satire about a rural police force, one man’s unrequited love for his bicycle and a tale about eternal guilt.
The night could have sold out three times over, such was the demand and 300+ more people are now aware of cystinosis who were not before.
Stephen Rea spoke about our charity from the stage just before the performance began:
“Cystinosis is a rare disease that, over time, causes the destruction of all organs and muscles of the body. The majority of those affected are children. Without treatment, those with cystinosis would not survive past their 10th birthdays. The current treatment slows down the deterioration process but does not cure it. It can cause severe side effects and it must be given every 6 hours to be effective. That means children and their parents must get up every night, for life, to administer the medication.
Cystinosis Foundation Ireland was set up by parents and families 10 years ago with three main aims - to support those living with cystinosis and their families; to raise awareness of the disease and to raise money to fund research. To date, the Foundation has funded research into a better treatment in Scotland as well as gene therapy research in University College Cork and UCD, to name just three. I have been involved with the charity for a number of years and the humour and courage of the parents is an inspiration.
Fundraising for a rare disease is particularly challenging but finding out more about the condition and finding better treatments, and ultimately a cure, is what drives the volunteers who run Cystinosis Foundation Ireland. The Foundation has funded research to the value of €1.2m since its inception 10 years ago. The climate for fundraising is increasingly difficult and the Foundation is very grateful to all those who support its work and those who are attending the event this evening. I would particularly like to thank my colleagues on stage tonight who did not hesitate when I asked them to perform in aid of such a good cause.”
The night raised €3,526 - thank you to eveyone who attended, bought raffle tickets and also, most importantly, donated their time on the night. Thanks also to the staff and volunteers of the Pavilion Theatre for all their help. Special mention too for Paddy Gavin who donated the wonderful hamper as first prize.
Stephen Rea Colin Reid Becky Jostin Niamh Crowley Neil Martin
Thank you to everyone who bought Christmas cards in December 2012 and further supported cystinosis research
DUBLIN CITY MARATHON 2012
WELL DONE and THANK YOU to our Treasurer, Liam McFadden and two great friends and supporters, Cal Egan and Leo McGrane who took part in this year's Dublin City Marathon to raise sponsorship to support cystinosis research.
Liam is a bit of a Marathon man with a few races under his belt and we were very impressed with his finishing time of 3.39.10, finishing 2981 out of 12178.
Cal and Leo walked their first marathon and took a little longer than Liam! They were both delighted with their achievement though and Cal said he felt ready to do it all over again that evening, the adrenaline was certainly pumping!
We told you a little while ago about the Runamuck Challenge, here's how the organisers describe it:
"The Runamuck Challenge is a cross country event over a wet and mucky course with various man made and natural obstacles like bale "jumps", net scrambles, super slides, tarzan swings, bridges, ditches, streams, tyres and tunnels.
It is designed to test your mental and physical strength and will leave you with a big grin on your face."
Well we had one brave soldier who braved the Kildare countryside on Saturday 20th October, Rachael Reilly. Well done Rach, she survived, but just about. When she has recovered sufficiently and her hand has stopped shaking with the trauma of the event she has promised to write and tell us all about it! So watch for an update soon.
And more photos of her torture here!
PRESTON FAMILY FUN DAY 2012
Once again the happy people of Preston and quite a few “immigrants” from surrounding towns, villages and countries descended on the Red Lion on a gloriously bright and sunny Saturday for their annual Fun Day in aid of cystinosis research.
Mine hosts Ray and Jo once again offered the best of hospitality along with a warm welcome, piping hot burgers and succulent hog roast. There was also “Cystinosis Beer” on sale, thanks to Buntingford Brewery who donated two kegs for sale on the day.
There were three live bands providing the best entertainment, they had the more mature audience literally tapping their feet while they practiced their jive moves to Genie & The Jivebombers, the younger members took up their spots to listen to the next big thing, The Informatives. And the poor girls from Just for Kicks braved the cool autumn evening to keep the crowd happy. We also had a guest appearance from the Haran trio who delighted us with a few traditional Irish tunes.
There was plenty of entertainment all day, with Philip providing the Flight simulator which was so popular all day, the tombola stall, cake and bread stall, face painting, Gary’s now famous quizzes that no-one ever gets 100% on, the Pinata that was bashed so fiercely the poor donkey nearly upped and left, the raffle and the auction which were both very generously supported.
Thank you to everyone who turned up in such large numbers to support the day and to Ray & Jo, Tracy & Gary, John & Julie and all of the many helpers who made the day such a success it raised €4,850!!! We are already looking forward to next year, can’t wait! More Photos of a great day
The extended family and friends of Jack McCauley in Belfast once again took part in this year's Belfast City Marathon to raise funds for cystinosis research. This wonderful relay team raised £2,050 through their efforts - THANK YOU so much.
Another £500 has been added to this total, thank you so much to all the staff and pupils at Ashfield Boys' High School for this wonderful donation to the McCauley's Marathon sponsorship. Thank you all so much, the total is now £2,550, which equates to €3,102.30!
This year's team were:
William McCauley, Willliam McCauley Snr., Willliam McCauley Jnr., Alannah Allen, Mark Brown, Chris Burns, Rachel Ferguson, Paul Haddock, Adrian Hughes, David Hughes, Ellen Hunter, Roger King, Nathan McDonald, Paul McDonald, Denis McKee, Liam Trainor.
We would also like to make a special mention to Karl Matos who organised a sponsored walk to and from school for a whole month and raised £172 for his efforts. He was an honorary member of the Marathon Relay Team.
The team also want to thank the Staff of St. Andrew's Gym for their donation and also the Staff and Customers of The Rex Bar for their generous support also.
Take a look at our Facebook page for some pictures of this great team.
We rested Sponge Bob Square Pants this year and Captain Jack Sparrow took his place! Thanks to all the ladies(!) who took part, no totals in yet of money raised but will let you know as soon as we do. Take a look at our Pirate Leader!
NINTH ANNUAL GOLF CLASSIC, GRANGE GOLF CLUB, RATHFARNHAM
FRIDAY 1ST JUNE 2012
Thank you so much to the 25 teams who took part on the day and to the numerous sponsors of tee boxes and prizes who contributed to making the day such as success. Full report up here soon. In the meantime, a few photos for you!
WELL DONE to Sheila Lord who is took part in her first Marathon, Sunday 29th April in Milton Keynes in horrendous weather conditions, driving rain and gail force winds...she said it was like running while having buckets of water thrown at her! THANKS SHEILA!
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
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 2011. 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 the 2011 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 at 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.
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 2011.
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!
THANK YOU EVERYONE who bought our calendar, which ran from October 2010 to December 2011.
2010 Preston Fundraiser was great fun once again....
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
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 *