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2011 Annual General Meeting
Steven’s Association Moonrise a.s.b.l. will hold its Annual General meeting on Saturday 10th December. All members and friends of the Association are very welcome to attend this meeting. Should you wish to attend, please RSPV to the Association's e-mail address by Wednesday 7th.
v Successes to date:
o Fundraising
o Annual Scientific Symposium of FARF (the Fanconi Anaemia Research Fund)
o Projects funded
v What’s next:
o EU-wide registry of people with Fanconi anaemia
o Networking with EU organisations
o Funding for 2012 – a more structured approach
v Membership of the Executive Board 23rd Annual Fanconi Anemia Research Fund Scientific Symposium Barcelona, October, 20-23, 2011
Each year, the Fanconi Anemia Research Fund holds a Family Meeting and a Scientific Symposium. The Scientific Symposium is an opportunity for doctors, researchers and scientists who study Fanconi anemia to meet, sharing information and learning more about the latest findings and research into Fanconi Anemia. This year, the meeting took place in Barcelona, Spain. Usually, the venue for the meeting is in the United States, so it was wonderful to have the opportunity to attend at a European location. Over the four days of the conference, some 270 researchers and clinicians from all over the world gathered to discuss research relating to a variety of topics, including: gene therapy, induced pluripotent stem cells, the role of the human papillomavirus in squamous cell carcinoma, and novel drug agents.
The European and US family support groups were well represented and it was an opportunity to network particularly with other associations from Europe. We have now included in the Links page, the websites of the European based associations who were present in Barcelona.
It was very interesting to listen to the scientific experts share their knowledge and breakthroughs with a wider audience and to hear about the progress being made particularly in the area of gene therapy. It was especially inspirational to hear from researchers engaged in the study of cancer and how they feel that studying Fanconi Anemia provides a unique insight which may eventually provide a gateway towards a cure. ****************
Niall Kenny Cycles from Budapest to Bratislava, to Vienna
Many thanks once again to Niall Kenny for remembering Steven’s Association Moonrise in his fundraising efforts. Niall, a UCD college friend of Steven’s cycled with a friend from Budapest, to Bratislava, to Vienna. With some intense cycling, they managed to cover the 310 kilometers in 3 days. Well done to both of you!
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Brussels 20K
This is now the third year that a team of runners has set aside the last Sunday in May to run 20 kilometers in support of the Association. As always, the Brussels 20KM race was a success. It does’nt seem to matter whether the sun shines or it whether it rains – we are always assured of a strong team of runners and supporters who spend the weeks leading up to the race training and seeking sponsorship and who turn out on the day to enjoy the unique atmosphere of the main streets of Brussels crowded with runners and cheering onlookers.
All runners were wearing the Association’s T shirts with its distinctive logo and some very respectable times were logged! However, the Brussels 20KM race is more about taking part and our Association is one of many charities who benefit from people’s generosity and support for this event.
The day started out warm and seemed to get warmer as the kilometers slipped away. As usual the final climb us the Avenue de Tervuren was quite a challenge and the finish line in the Parc de Cinquantenaire was certainly a welcome sight!
As usual, people have been so very generous with their sponsorship. A huge thank you to everyone who supported the Association in any way throughout this event – by running, by cheering us on our way and through your donations.
We hope you enjoy some of the photos of the event and that we will see many of you next year at this important and enjoyable fundraising event – keep the 27th May 2012 free!
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All About Steve
Steven was a young man who always enjoyed his life to the full. He was in full pursuit of his dreams and ambitions when he was diagnosed with Fanconi anaemia in March 2005. Despite the severity of this diagnosis, Steven insisted on living his life uninhibited by the threat of this illness. Steven had a stem cell transplant in June 2007. Sadly, on the 28th November, 2007, at the age of 24, Steven passed away in hospital in Paris as a result of severe graft versus host disease following his transplant.
To read more, go to All about Steve, or, you can read more of his story at: http://skeyesat24.blogspot.com
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Waterford half-marathon
We added a new event to our calendar this year, the Waterford half-marathon. Originally planned for early December, major snowfalls made the course unsafe and the race finally took place on the 15th January.
The Waterford half-marathon begins in the city and follows a very pleasant route out to the coast and back to the city again. It is a gentle route, with few hills and a fantastic, friendly atmosphere. Many of the runners come from running clubs in the region, but this is also an important national race, with committed runners from throughout Ireland and some, such as ourselves, from abroad. The main challenge this year was driving rain and strong winds – fellow runners assured me on the outward journey that the wind would be behind me as we turned to head back to Waterford, but, if this happened, it was certainly not very noticeable!
It was great to be able to run an event in Evelyn’s home city and we were delighted with the support received. Not only did we have friends and family running, we had supporters lining the route, offering encouragement through the wind and the rain.
To give you an idea of the enthusiasm, take a look at the core team, as we limber up for the run.
 A big thank you to Waterford – your support to the Association is precious and much appreciated.
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