Good luck to Helen Eyre and Rachel Deakin from Bamford in Derbyshire who are cycling from Manchester to Blackpool on 10th July for Fanconi Hope, hoping to reach the seaside for fish and chips – before dark!
Congratulations to Kathryn Berrisford, an embryologist from Care Fertility in Nottingham, who ran the White Peak Marathon in May, raising over £400 for our charity.
Thanks Kathryn!
With your help we have now raised an incredible £100,000 over the last two years! Thanks to everyone who has contributed.
The funds raised have helped to fund the first ever UK Standards of Care Guidelines, now freely available to clinicians and families, a number of clinician and family meetings and a contribution of over £42,000 to a world-leading UK research project using gene therapy to help understand the blood problems associated with Fanconi Anaemia.
This important research is creating induced pluripotent stem cells (iPs cells) from patients’ skin cells. These iPs cells have the ability to grow into blood cells which are a perfect match for the patient as they are from the patient’s own skin cells. To date the research team, headed up by Professor Majlinda Lako at Newcastle University in conjunction with Professor Christopher Mathew from King’s College London, has derived two induced pluripotent stem cells lines from a FA-D2 patient via reprogrammming of their skin cells. They are currently characterising these cells using a variety of molecular and cellular assays (experiments) to ensure that these cells are genetically identical to the FA patient. They are also working on two additional methods with the aim of generating in vitro (laboratory environment) disease models for other FA types that are unresponsive to the reprogramming process due to the accumulation of genetic mutations and chromosomal instabilities.
Once these cell lines have been proved to be genetically identical to the FA patient’s faulty blood cells, they can then be used to model the effects of various drugs in a much more realistic way than with current modelling methods, thereby helping to find a cure for Fanconi Anaemia.
Hurry if you want tickets for Nicky Fullerton’s Charity Boxing Night on Saturday October 16th at the Wellington Park Hotel, Belfast.
Nicky, a sports journalist and former morning radio DJ will be doing six one minute rounds with professional boxers to raise money for Fanconi Hope. The boxers include current European Champion Brian Magee, Current British Champion Martin Lindsay, Former Commonwealth Champion Martin Rogan, Carl Frampton, Jamie Conlon and Mr X ( a former World Champion).
To order tickets please e-mail Nicky at: nickyfullerton at hotmail.com. (Please replace the at by @ This is an anti-spam measure)
On Sunday 26th September Mark Gillespie is taking part in a one mile open water swim at Salford Quay as part of the Channel 4 Great British Swim series.
You can sponsor him via his JustGiving page here
Good luck Mark!
Fanconi Hope has contributed an article on FA, highlighting the need for bone marrow donors particularly from ethnic minority communities, in the August edition of the Samec Trust Newsletter. Download here
The SAMEC Trust (Service Access To Minority Ethnic Communities) was set up to address the inequalities in awareness of health and access to health services. It is a national charity providing information on ethnic health with the purpose of saving lives.
Charity Boxing Night
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.
Not one but two fundraising events! Paul Carruthers and the Le Tower to Tower Team are not only busy preparing for their epic cycle ride from Blackpool Tower to the Eiffel Tower but there is now a fundraising gig beforehand as well! The money raised is to be shared equally between Fanconi Hope and the NSPCC.
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
Our sincere thanks to Louise Parry, her friends, family, helpers and all those who attended this major charity event at Tatton Park in March. Now all the money has been counted and the bills paid I am delighted to report that after months of hard work, over £5000 has been raised from this event.
Thanks from everyone at Fanconi Hope – you are helping to make a real difference!
Tatton Park, the magnificent setting for the Charity Ball
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| Louise, Emily and Amy Parry | Local TV Personality Paul Crone |
Support from Check Orphan
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
"In accepting the role of patron of the Fanconi Hope Charitable Trust I believe that this small charity can have a big impact on many lives."
