Facing the Future Together

The Charity

Please see posts at the foot of page for the latest Charity news.

We are now on the countdown to our first £100,000 by our supporters, with £94,000 raised to date!

Fanconi Hope is a registered national charitable trust set up by parents of Fanconi Anaemia (FA) affected children and clinicians with an interest in FA:-

To support a UK Fanconi Anaemia National Registry so as to ensure Fanconi Anaemia affected children and their families are kept track of and provided with the best care.
To promote awareness and understanding of Fanconi Anaemia among affected families, the medical profession, and the general public.
To encourage translational research which may directly benefit Fanconi Anaemia affected children and their families.
To encourage research in the area of Fanconi Anaemia that may have benefit for the general public, e.g., in the treatment of cancers in general.

When you donate to Fanconi Hope you can be sure that the money will be spent responsibly and in ways that will benefit families affected by Fanconi Anaemia.

Our 3 parent trustees and 3 clinician trustees all give their time voluntarily and do not charge for travel expenses.
Every penny of the funds raised that we apply to research in the UK does exactly that. We have no management overhead associated with this as we have an arrangement in place with our US parent organisation, the Fanconi Anaemia Research Fund, to make use of their 15 strong scientific advisory board (which includes international representation) to identify, monitor and review appropriate research projects.
To give confidence in our financial governance, our accounts are being prepared professionally and are being independently reviewed by Josephine Maltby, Professor of Accounting and Finance at the University of York.
We have been very fortunate in securing the services of the Duchess of Devonshire as our Patron to oversee the work of the Charity.

First Fanconi Hope Research Grant: Fanconi Hope is pleased to announce that in collaboration with the US Fanconi Anemia Research Fund we have provided a grant of £30,000 for the first UK research programme relating to the use of stem cell technology in conjunction with gene therapy which in future may provide a cure for Fanconi Anaemia; ‘Using iPSC technology to understand early haematopoietic development in Fanconi Anaemia patients’.
Fanconi Hope’s research grant of £30,000 is now funding the first phase of the work, and we have set ourselves a target of raising a further £100,000 for the remaining phases. Further information can be found on our Fanconi Hope Funded Research page

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You can help us achieve our aims by:

Donating directly to Fanconi Hope:
- Online: Single payments or direct debits. Pay by credit/debit card or Paypal. DONATE NOW. (You can also GiftAid online donations increasing their value by 28% at no extra cost to you)
- By Post: Please send cheques payable to ‘Fanconi Hope’ to Fanconi Hope, PO Box 905, Southsea, Hants, UK PO1 9JG. By using this donation form you can GiftAid your donation, increasing its value by 28% at no extra cost to you.
- By Standing Order: Please complete this Standing Order Form, send the top half to us at Fanconi Hope, PO Box 905, Southsea, Hants, UK PO1 9JG and take or send the bottom half to your bank.
- Need help? Contact Bob Dalgleish by e-mail , call 0845 271 2811 or write to Fanconi Hope at PO Box 905, Southsea, Hants, UK PO1 9JG
Using online shops that will donate money to Fanconi Hope as you use them
Applying for a Charity Credit Card
Organising fund raising events for Fanconi Hope
Offering your skills and services to Fanconi Hope
Arranging a Local Bone Marrow Donor Registration Clinic
Supporting our current fundraisers

Our fundraisers have already raised thousands of pounds for Fanconi Hope in our first year through walking, running, cycling, jumble sales, social events and more. Please join us.

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Charity News

Charity Boxing Night in Belfast

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 [...]

July 27, 2010

Le Tower2Tower Fundraising Events

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: [...]

Tatton Park Ball Raises over £5000!

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 [...]

May 26, 2010

More Support for International FA Day

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 [...]

April 21, 2010

International Fanconi Anaemia Day – May 1st 2010

Fanconi Hope is proud to support International Fanconi Anaemia Day on May 1st 2010.
See our new page on the website.

International FA Day Website, Facebook Page

March 20, 2010

Team Leighton – Edinburgh Marathon

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

February 27, 2010

First Fanconi Hope Research Grant Awarded

Fanconi Hope is pleased to announce that in collaboration with the US Fanconi Anemia Research Fund we have provided a grant of £30,000 for the first UK research programme relating to the use of stem cell technology in conjunction with gene therapy which may in future provide a cure for Fanconi Anaemia; ‘Using iPSC technology [...]

January 16, 2010

Fundraising Update

Your fundraising efforts in recent months have been magnificent, bringing in over £10,000!
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 [...]

October 4, 2009

Jules Sanders goes on Trafalgar Square Plinth for Fanconi Hope

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 [...]

September 2, 2009

Donate to Fanconi Hope when you sell on eBay

Donate while using eBay

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 [...]

June 27, 2009