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

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

 Tatton Park, the magnificent setting for the Charity Ball

We now have support for International FA Day from CheckOrphan, a non-profit organization located in Basel, Switzerland and Santa Cruz, California dedicated to rare, orphan and neglected diseases.

They have just posted a link to the International FA Facebook page from their Twitter and Facebook pages (which have 1,417 and 382 followers, respectively). They will continue to promote the event using their social media through May 1 and will use the announcement in their daily newsletter (which reaches 815 subscribers) to promote the event.

Thank you Check Orphan for playing your part in publicising International FA Day

See our new page on the website.

International FA Day Website, Facebook Page

Thomas O’Connor is running the Edinburgh

Marathon for Fanconi Hope on Sun 23rd May 2010. Please show your support by sponsoring him at http://www.justgiving.com/ThomasTeamLeighton  or turning up to cheer him on. Look out for his purple Fanconi Hope T Shirt!

There is also a ThomasTeamLeighton Facebook Page

Background:

Recent joint research by the Salk Institute for Biological Studies in Calfornia, the Center of Regenerative Medicine in Barcelona (CMRB) and the CIEMAT Centre in Barcelona have shown for the first time that in principle human genetic diseases such as Fanconi Anaemia can be cured using a combination of gene therapy and induced pluripotent stem (iPS) cell technology. 
The potential significance of this is that corrected cells from the patient’s own tissue would be used in a bone marrow transplant thereby avoiding the issue of tissue rejection which often causes cancers subsequently in transplanted patients.
This groundbreaking research has been shown to cure an FA-affected cell and in theory this could then be transplanted into a FA-affected patient to cure the blood-related element of the disease. However many hurdles remain before the theory can become practice not least in preventing the reprogrammed cells from inducing tumours, and the international team are now funded to pursue research aimed at translating basic science into clinical cures. 

Prof Majlinda Lako

Prof Chris Mathew

Now for the first time in the UK a collaborative research programme into this exciting new technology has been initiated between a group in Newcastle led by Prof Majlinda Lako working with induced pluripotent stem (iPS) cell technology and a group in London led by Prof Chris Mathew researching in Fanconi Anaemia.

In brief, the programme involves generating and characterising iPS cell lines (the first phase of the programme). Next, the team will study whether these iPS cell lines behave the same way as normal FA cells with respect to DNA repair, genomic instability and the ability to make blood cells. If they do, they will then have a good FA model (which can be used in a laboratory environment rather than testing on humans) to test different corrective measures/drugs for the faulty DNA repair mechanism. The team will then investigate to see whether the process of creation of blood producing cells is different for FA and control patients. This should give a better understanding of what goes on so that hopefully they can help improve the process of curing patients through new therapeutic regimes using gene therapy and iPS cell technology.

This research project is being funded by Fanconi Hope in collaboration with the Fanconi Anemia Research Fund (FARF) in the US. Fanconi Hope has provided a grant of £30,000 for the first phase of the work and has set a target of raising a further £100,000 for the remaining phases. This research topic was selected by the Trustees of Fanconi Hope from a shortlist of candidate UK research programmes which have been approved for funding by the FARF Scientific Advisory Board, whose 14 members comprise FA specialists from the US, Canada, Holland and the UK.

Further details of the research can be found on the Fanconi Hope Funded Research page.

Here are some of the larger donations in August and September:

• Our Patron, the Duchess of Devonshire nominated us as her charity for the Chatsworth Country Fair, raising £4000.
• Jules Sanders bravely performed on the Plinth in Trafalgar Square raising over £600 
• Val Taylor, ably assisted by Margaret and Martin Barrett organised a Film Quiz Night in Wanstead raising over £2000 
•  Paul Carruthers  cycled from Lands End to John O’Groats raising over £3100
• David and Sam McDowell  raised £200 from a cake sale.
• Andy and Jeannie MacGregor from Reigate  held a quiz night, raising  £830.

See more

In addition to this there have been numerous smaller donations, all adding up to a significant total.

We are also now receiving a steady income from your online shopping and through donating a percentage of Ebay sales using ‘Ebay for Charity’ .

So thanks to everyone and keep it up!

Jules Sanders goes on the ‘Plinth’ in Trafalgar Square in London for Fanconi Hope at 3am on Sept 16th.

You can see her ‘live’ on the webcam at www.oneandother.co.uk

“I always try to do at least one thing a year that is completely different and does some good somewhere. I have done half marathon walks, and the G8 poverty march in Edinburgh, as well as singing in a ‘peoples choir’ in Chester Cathedral at Christmas. To stand on the plinth for one hour seemed like a good challenge for this year. I will be sponsored to raise money for Fanconi Hope”  - Jules Sanders

Find out more at http://www.oneandother.co.uk/participants/Jules_S

• Now you can donate  between 10% and 100% of the price of anything you sell on eBay.
• Once you’re ready to sell your item, go to the Sell hub and select ‘Advanced Sell’.
• As you’re filling out the details, look out for the charity box just below where you set your price. Select Fanconi Hope and the percentage (10%-100%) of your final selling price that you’d like to donate.
• Every time you list an item for charity, you’ll get a fee credit on your basic insertion and final value fees equal to the percentage you donate. So if you donate 50% of your selling price to a charity, eBay will waive 50% of your fees.
• Start selling