About the Charity and Progress to Date
The Fanconi Hope Charitable Trust
Three parents of affected children, Thomas Carroll, Richard Kawalek and Bob Dalgleish started the Fanconi Hope Charity in 2008, to fund research into this disease, to help engender consistent best practice treatment across the UK by initiating and running an NHS FA Clinical Network and to provide much-needed support to affected families through the provision of information and improved family contact. The Charity is very fortunate to work under the patronage of The Duchess of Devonshire, who takes an active part in Annual Trustee meetings.
Due to the rarity of the disease Fanconi Hope has to reach out internationally, with the US-based Fanconi Anaemia Research Fund (FARF) being our principal partner. FARF provide considerable support and guidance and we are able to use their Scientific Advisory Board for Fanconi Hope-sponsored research projects in the UK.
Although the charity is small and staffed by volunteers in their spare time, Fanconi Hope has been able to make significant progress in a number of areas:
Bringing Clinicians Together to Share Best Practice:
- The Fanconi Anaemia Clinical Network has been established, within the context of our National Health Service and includes around 30 clinicians across the UK and Ireland.
- A UK Standards of Care document has been published for the first time by the Clinical Network, now been widely circulated throughout the UK Clinician community.
- 2 Clinicians conferences and a combined Family and Clinician conference have now been held.
- A Research Network has been set up, linking researchers working in the field of Fanconi Anaemia in the UK.
- Fanconi Hope has now donated over £60,000 to UK Fanconi Anaemia research projects.
- Fanconi Hope, in conjunction with the Fanconi Anemia Research Fund, initiated and co-sponsored an International FA Gene Therapy Working Group Meeting in London in Nov 2010 aimed at expediting the transition from gene therapy research for Fanconi Anaemia into clinical trials worldwide. This was described by the host, Prof Adrian Thrasher of UCL as “a real platform for the accelerated development of collaborative clinical studies.” and a report from the meeting has subsequently been published in Nature. The Working Group Meetings, chaired by Prof Jakub Tolar, have continued on an annual basis.
- In 2015 Fanconi Hope is funding a 3 year Study into the Long term Effects of Fanconi Anaemia to be led by Manchester University and funded by Fanconi Hope. This study will fund a UK FA Coordinator who will create and maintain a patient-led UK National Patient Registry in order to improve patient care and facilitate research. The Coordinator will act as a point of contact for patients & families, and clinicians & researchers.
Bringing Families Together:
- The website www.fanconihope.org and Facebook site (www.facebook.com/fanconihope) have been established to act as a focus for all activities and to provide the means for sharing information.
- Family Meetings have been held in the grounds of Chatsworth House and at Snibston Discovery Centre.
- A Family Network has been established enabling families to make contact with each other.
The Fanconi Hope Charity and Fundraising Activities:
- Fanconi Hope was set up and registered in 2008.
- Families, friends and colleagues continue to contribute to the fundraising effort and to date over £145,000 has been raised.
- Members of Fanconi Hope worked closely with ITV Researchers to develop the Emmerdale storyline concerning the diagnosis of one of the characters, Sarah Sugden, with Fanconi Anaemia.
- Fanconi Hope exhibits at and provides a level of sponsorship for, the British Societies for Gene and Cell Therapy in efforts to persuade researchers to use FA as the candidate disease for their gene therapy research.
- Fanconi Hope has raised awareness in other sections of the medical community, through bodies such as the British Society for Haematology and the British Society for Surgery of the Hand.