Families
Welcome to the Family section of the website.
Fanconi Hope, through the Family/Clinical Network serves to bring clinicians together, to agree national standards of care and initiate relevant research. We aim to provide support for families by providing information and also guidance as to where additional support and other services may be found. We can be contacted by e-mail, by writing to Bob Dalgleish at Fanconi Hope, PO Box 905, Southsea, Hants, UK PO1 9JG or by calling Bob on 0845 271 2811.
Please note that the Fanconi Hope Charitable Trust is run by a number of FA parents in their own personal time. There are no employed administrative staff or professional counsellors. We are happy to be contacted by email/phone and to share our experiences. However, we are not in a position to provide professional counselling, advice, or ongoing support, and as with all FA-affected families, we are also having to deal with the personal challenges that FA presents. There are many options available for free professional support and counselling in the UK. See Support for Parents page for more information.
Fanconi Hope works in partnership with the Fanconi Anemia Research Fund (FARF) in the US. If you wish to contact other families in the UK or are willing to be contacted by them, FARF maintain a worldwide directory of such families, including many in the UK. This directory is available by registering with FARF via their family support coordinator Teresa Kennedy.
FARF also manages an E-mail Support Group which allows FA families to exchange questions and information with other FA families. Many families find the E-group to be a valuable and readily available source of information to help them deal with the diagnosis and effects of Fanconi Anaemia.
Fanconi Hope has a Facebook page where you can interact with other FA families and Fanconi Hope Fans.
Fanconi Hope also works in partnership with Contact a Family. A child with Fanconi’s Anaemia may required extra support associated with their condition. Parents may be entitled to some additional financial help or your child may need support at school. Contact a Family supports families who have children with any health condition or additional need. They have a freephone helpline staffed by advisers who can help with a wide range of topics including grants/funding. They also produce a wide range of publications that you may find useful, for example, for siblings. Visit their website for more information about their services www.cafamily.org.uk or call their freephone helpline on 0808 808 3555 available Mon-Fri 10am-4pm and Mon evening 5.30-7.30pm
Help from families and friends is vital if we are to raise sufficient funds to achieve our objectives and make a difference to the prospects of those affected by FA.
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Standards of Care for Fanconi Anaemia affected Individuals and their Families
- This important set of guidelines is available to download here. If you would like a printed copy, please contact us
Fanconi Anaemia National Registry
- This Registry, now in the process of being set up is to enable, amongst other things, more research to be conducted in the UK.
Read more about the Registry
Newsletter
- Spring 2009 Edition is available to download here.
Information Sheets
- Information on a range of topics ranging from medical to financial are gradually being created and can be found here. If you have a topic you would like covered, please contact us
Family News
Family Fun Day Photos
The sun shone for the Family Fun Day at Snibston organised by F.A.B. and Fanconi Hope. This was a chance for FA families to meet in a very informal atmosphere and many new friendships were made. 38 people enjoyed the day which included Mr Chuckle Chops the children’s entertainer, a musical interlude and the varied facilities of Snibston [...]
July 11, 2010
Simple Spit Test to find Bone Marrow Matches
The Anthony Nolan Trust has announced that would-be bone marrow donors can now give a quick spit test rather than give a blood sample.
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 [...]
July 4, 2010
FA Family Fun Day 10th July 2010
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 [...]
June 13, 2010
First UK FA Research Conference Held
Many thanks are to due to Dr Helen Walden of Cancer Research UK for organising the first UK FA Research Conference, held on May 24th.
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 [...]
May 26, 2010
British Society for Gene Therapy Conference Report
Thomas Carroll and Bob Dalgleish of Fanconi Hope attended the British Society for Gene Therapy’s Annual Conference in London on March 29th. Thomas Carroll spoke at the invitation of the BSGT president, Professor Adrian Thrasher on the Public Engagement Day on ”Fanconi…hope: from ‘Saviour Sibling’ to gene therapy”. Thomas attended for the whole duration of the 3 [...]
April 23, 2010
New FA Book Published This Month – ‘Saving Henry’
A book about Henry Goldberg who died from FA, written by his mother, is being published this month.
‘Saving Henry is a powerful and poignant memoir about a mother’s love and the bravery of her son through their fight to cure his life-threatening illness – and the impact that Henry has had on the lives of [...]
March 20, 2010
Camp Sunshine Application Forms now available
Application Forms for the Camp Sunshine (East Coast USA) annual event organised by the US Fanconi Anemia Research Fund for families affected by Fanconi Anaemia are now available and early booking is advised. Application Form here .
Teresa Kennedy, FARF’s Family Support Coordinator advises:
“Attendance to the meeting is free and includes all meals and lodging. Transportation is provided [...]
February 28, 2010
Fanconi Hope is one of the Sponsors of BSGT Conference
Fanconi Hope is one of a number of groups sponsoring the British Society of Gene Therapy Annual Conference to be held in London, 29th -31st March. The event is chaired by Professor Adrian Thrasher, the BSGT President, who some of you may recall, gave a presentation at our last Family Meeting.
Thomas Carroll, our Chairman, will be [...]
News on French and Belgian FA Groups
News on two European FA Groups:
The revamped French FA group AFMF’s website (www.fanconi.com) is now live. An approximate English translation courtesy of Google Translate can be viewed here. Congratulations are due to Marie-Pierre Bichet and her team on an impressive result.
Fanconi Hope has been in discussion with Steven’s Association Moonrise, an FA charity in Belgium founded in April 2009. [...]
February 24, 2010
Contact a Family Survey – Your Help Required
An invitation from From Contact a Family to complete their questionnaire:
“We are repeating a survey and report done in 2008 about the finances of families with disabled children – Counting the Costs. It will help us to lobby for change after the general election. We need 800 families to take part – can you help [...]
February 23, 2010
