UK & Ireland Fanconi Anaemia Family/Clinical Network

Reflecting the importance of gene therapy to future treatment improvements for Fanconi Anaemia, Fanconi Hope contributed sponsorship for this year’s combined European and British Societies for Gene Therapy Collaborative Congress in Brighton on Oct 27-31, 2011. 

Professor Lord Winston can be seen in the accompanying photo presenting the keynote speech against the backdrop of sponsors of the event.

Day 1 of the event, as is now a regular feature of BSGT Conferences,  was a Public Engagement day, with many schools represented. The Naked Scientist team were in attendance for the whole event and two of their most relevant podcasts can be downloaded here:

• Day 1: Public Engagement in Gene therapy
• 1 hour Gene and Cell Therapy special from BSGT conference, Brighton
• Further podcasts from the conference can be found here 

The Panel during Public Engagement Day, chaired by Chris Smith, one of the Naked Scientists. Professor Adrian Thrasher, President of the BSGT is seated second from left.	The Fanconi Hope Stand	School pupils engaging in a practical session

 The 2012 conference is to be held in Mar 12. Schools wishing to participate in the public engagement day should contact the BSGT

Team Leighton are holding a Charity Night on the 25 th of Nov. @ 543 club in Dalmuir, Glasgow, in aid of Fanconi Hope. Tickets £5, everyone welcome.

Please: If anyone has any raffle prizes these would be especially welcomed.

Contact for further details.

The National Lottery Olympic Park Run is your chance to make sporting history and be the first to cross the London 2012 finish line. To celebrate the unique contribution National Lottery players have made to London 2012 and British sport, The National Lottery is offering you the once-in-a-lifetime opportunity to run a five-mile course through the Olympic Park starting at 14:00 on Saturday 31 March 2012.

Open to entrants of all abilities, whether you’re an experienced runner or a novice, the route will pass iconic, world-class venues like the Velodrome and Aquatics Centre and culminates in the first public access to the Olympic Stadium – the centrepiece of the London 2012 Olympic and Paralympic Games.

On the day, a host of past and present Olympic and Paralympic stars will be present – both participating and offering support – as you achieve your own sporting glory on the road to London 2012. Your nearest and dearest will be able to cheer you on as you achieve your sporting best, as every runner will be issued with two spectator passes. These spectator passes will give access to the Olympic Stadium on the day, enabling two of your friends or family to share the unforgettable atmosphere and witness the landmark moment when you cross the finishing line.

HOW TO ENTER

The cost of entering The National Lottery Olympic Park Run is just £15.

There are 5,000 places available to the public for this event and entry will be through a ballot system open until midnight on 27 October 2011.

As well as experiencing what it’s like to be an elite athlete running in the Olympic Stadium, the entry fee includes a race number, two spectator passes for the Olympic Stadium, a full information pack sent to you approximately two weeks before the event, a high-quality event T-Shirt to wear on the run, computer chip timing for a completely accurate running time, on-course refreshments, a finisher’s pack and souvenir medal.

This amount will only be debited from successful applicants and you will be informed if you are successful by email prior to Friday 4 November 2011.

Enter The National Lottery Olympic Park Run ballot

According to ‘Digital Spy’, Emmerdale was the most-watched soap on Wednesday evening as Sarah’s illness storyline gathered pace, according to overnight figures. An hour-long episode of the ITV1 show pulled in 6.6m (31.8%) from 7pm, as Debbie and Andy were informed that their young daughter has Fanconi Anaemia, a rare genetic disease.  more

The number of hits on the Fanconi Hope website also rose to over 30 times the normal level as the story unfolded last week.

And a big thank you to ITV for making monthly donations to Fanconi Hope for as long as the storyline runs.

Fanconi Hope website -  number of hits.

ESGCT and BSGT Collaborative Congress 2011, Brighton UK

Fanconi Hope is contribution sponsorship of £1000 for this important gathering of the European Gene Therapy community in Brighton from 20th to 23rd October 2011. As well as having a Fanconi Hope stand in the exhibition area on the 20th we will be providing literature which will be distributed to all attendees at the conference in their delegate pack, explaining the reasons why FA is an ideal candidate for gene therapy research. With many hundreds of delegates and a significant attendance from the Press this is an important forum in which to raise awareness and get our message across.

The President of the British Society for Gene Therapy, Prof Adrian Thrasher, will also be participating in our International FA Gene Therapy Working Group Meeting in Barcelona the previous week.

“The theme for Brighton 2011 is “Letting the science do the talking” so you can expect a focus on cutting edge science, translational research and latest data from right across the world. With topics and extra events for students, young scientists, industry, clinicians and principal investigators at a quintessentially English seaside town, Brighton 2011 is set to be among the best ESGCT Congresses to date”  More information

The International FA Gene Therapy Working Group will re-convene at the 23rd Fanconi Anemia Research Fund (FARF) Annual Scientific Symposium in Barcelona in October, at a meeting co-sponsored by FARF, Fanconi Hope and the Spanish group, the Centre for Biomedical Network Research on Rare Diseases (CIBERER). 

A report on the first meeting by Prof Jakub Tolar published in Nature can be read in its entirety here

You can read more about the Working Group and the participants at the first meeting here

Congratulations to all our recent fundraisers for raising so much money for research into Fanconi Anaemia this summer.

And with more events planned, including Tom O’Connor running the Athens Marathon in November and Amie-Louise Lake’s Lake-to-Lake Cycle Ride next March, the fundraising for critical research into Fanconi Anaemia continues.

Mark Gillespie and James who have raised over £790 so far from their Mourne Mountain Marathon (Sep 11)

Kieran O’Malley from Portsmouth who raised over £740 from his 1200Km Paris-Brest-Paris Cycle Ride which he did in less than 85 hours (Aug 11). Kieran in centre of photo

Helen Eyre and Rachel Deakin from Bamford in Derbyshire who raised over £780 from their Manchester to Blackpool Cycle Ride (Jul 11)

Kathryn Berrisford, an embryologist at Care Fertility in Nottingham, who ran the White Peak Marathon, raising over £400 (May 11)

Fanconi Hope is pleased to announce the award of a £20,000 research grant to Dr Ketan J Patel,  MD, PhD, from the Laboratory of Molecular Biology, Cambridge University for his ongoing work on a research project entitled:  Reconstituting and Dissecting Monoubiquitination in the FA Tumor Suppressor Pathway.
Dr Patel, who is recognised as a world expert in molecular research related to Fanconi Anaemia, is being funded in this research programme by the US Fanconi Anaemia Research Fund (FARF). Fanconi Hope’s contribution to this funding represents a significant proportion of the total required over the next year and demonstrates our commitment to support key FA researchers in the UK.

Our intention is to have an interview with Dr Patel shortly, in particular so that a description of the research programme can be provided in layman’s terms.

Good Luck to Kieran O’Malley who will be setting off on August 21st with around 6000 other riders on this Paris-Brest-Paris  cycle ride – 1200km in 90 hours!

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