Sasha and Mark Gillespie are organising a Charity Boxing Night in Belfast on 16th October 2010.

Nicky Fullerton,  a sports journalist and former morning radio DJ will be doing five, one minute rounds with professional boxers. Nicky’s father, Jackie Fullerton, a BBC Sports commentator, will be commentating on the night.

A charity auction will also be held, so if you wish to donate any good prizes please contact Fanconi Hope.

Tickets priced at £10 are going fast, with over 120 already sold. If you would to attend the event please contact Fanconi Hope.

Listen for news of the event on radio U105. Look out for newspaper coverage of the event in the Irish local and national papers.

The Gig: August 19th, Manchester Deaf Institute

3 to 4 bands are lined up including a special guest slot from Steve Pilgrim. Steve is Paul Weller’s drummer (and solo artist in his own right) and has agreed to play!

The Blackpool to Eiffel Tower Cycle Ride: Starting Sat 28th August, arriving 7 days later.

Please join in the send-off party at Blackpool Tower, or the arrival party at the Eiffel Tower! (Exact timing details tbc).

And please encourage friends and family to sponsor the ride at the Le Tower to Tower JustGiving page.

Find out more on the Le Tower toTower website

This amazing figure, achieved in less than two years, is due to the magnificent efforts of our FA families and friends across the UK and Ireland.

This has enabled us to publish the first UK Standards of Care, hold Clinician and Family meetings and provide over £30,000 for UK FA research. We will also shortly be funding an international gene therapy workshop and making a further significant donation to UK FA research.

Thank you everyone!

Thanks are due to Christine Westmoreland and Jeannie Dalgleish for organising the event and to Helen and her team at Snibston for their very friendly and efficient service.  More photos here

Previously, would-be donors were asked to give blood samples to establish their tissue type, which meant visiting a doctor or attending a recruitment event in their area. The new saliva kits launched today can be sent by post to those in England and Scotland who want to join the register and all they will need to do is complete a medical questionnaire, spit into a tube and send it back. The Anthony Nolan Trust is the first in the world to use the ‘revolutionary’ new system, which it hopes will appeal especially to busy young adults.

Fanconi Hope welcomes this new way of donor testing as it should increase substantially the number of donors available on the Registry.  David and Alison Carroll are part of the new Anthony Nolan awareness campaign. Read more in the Daily Mail.

The charities Fanconi Hope and Fanconi Anaemia Breakthrough are organising a Family Fun Day at Snibston Museum and Discovery Centre on Saturday July 10th 2010 between 10.30am and 4.30pm.  Download our flyer here.  Snibston is located in Leicestershire 5 miles from J22 of the M1. Map

No formal talks or presentations,  just a fun day out and a chance to talk to other FA families.

Activities include:-

• Children’s Entertainer for our Families
• Indoor and Outdoor play areas
• Giant Sandpit
• Hands—on Science and Technology Museum
• Toybox
• Costume Museum
• Transport Museum
• Colliery Tours
• Nature Walks
• Refreshments
• Lunch

If you are interested in attending please could you let either Jeannie Dalgleish or Christine Westmoreland know how many people  might attend.

Jeannie Dalgleish (Fanconi Hope) on 0845 271 2811 or e-mail Jeannie  or

Christine Westmoreland (Fanconi Anaemia Breakthrough) on 0115 926 9634

Oregon Health & Science University is partnering with the University of Oregon and Harvard Medical School to expedite basic science research into new and existing drugs and compounds that may prevent the complications associated with Fanconi anemia, an inherited condition that can lead to bone marrow failure and cancer.

With a new $10.7 million grant from the National Heart Lung and Blood Institute, a branch of the NIH, the research teams will screen and sort thousands of drug candidates in mice at OHSU, zebra fish at UO and human cell lines at Harvard.  more

 A big thank you also to Cancer Research UK for funding the event. In supporting this event and in funding FA research, Cancer Research UK has shown its commitment to FA research as a means to furthering research into cancers in general.

The conference was attended by 25 researchers from the FA  molecular/cell biologist community and also a representative from the FA gene therapy community, Prof  Linda Lako, whose research Fanconi Hope is currently funding.

A representative from Fanconi Hope was kindly invited to attend and to speak briefly at the outset to explain the charity’s role in trying to bring together the UK FA research community and in expediting FA research.

It was very encouraging to see so many of the the researchers meeting for the first time and discussing ways of helping each other. It was also gratifying to realise that there were now in excess of 25 researchers from across the UK working in just this one area of FA research – molecular biology.  When you add the researchers working in other aspects of FA research it proves there is a significant body of research now in the UK devoted to Fanconi Anaemia.

One of the conclusions from the event was that there was an appetite for further such events. Fanconi Hope fully supports this and intends to be actively involved in the organisation of future research conferences not only in the molecular biology field but in FA research more generally.

The programme of events can be downloaded here.

Prof Lako discussing her Gene TherapyResearch	Prof Neil McDonald and Dr Helen Walden in discussion during the coffee break	Dr Ambrose Cole discusses the FA Core Complex	Question Time

Thanks from everyone at Fanconi Hope – you are helping to make a real difference!

 Tatton Park, the magnificent setting for the Charity Ball

Fanconi Hope has Trustee membership of the BSGT and is now an official charity sponsor.  Our logo can now be seen on their Charity partners web page. We recognise the tremendous significance of gene therapy as a potential cure for FA and are seeking to expedite the move from basic research to clinical trials through helping to link relevant groups and individuals and through lobbying for Eu funding to support trials.

Our Information Sheet for the Gene Therapy research community	Thomas Carroll presenting on “Fanconi…hope: from ‘Saviour Sibling’ to gene therapy”	Thomas (left) in discussion withProf Adrian Thrasher (2nd L), current BSGT president and Prof Len Seymour, past president.(on right)