UK & Ireland Fanconi Anaemia Family/Clinical Network

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 Discovery Museum.

Thanks are due to Christine Westmoreland and Jeannie Dalgleish for organising the event and to Helen and her team at Snibston for their very friendly and efficient service.  More photos here

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 be sent by post to those in England and Scotland who want to join the register and all they will need to do is complete a medical questionnaire, spit into a tube and send it back. The Anthony Nolan Trust is the first in the world to use the ‘revolutionary’ new system, which it hopes will appeal especially to busy young adults.

Fanconi Hope welcomes this new way of donor testing as it should increase substantially the number of donors available on the Registry.  David and Alison Carroll are part of the new Anthony Nolan awareness campaign. Read more in the Daily Mail.

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 to talk to other FA families.

Activities include:-

• Children’s Entertainer for our Families
• Indoor and Outdoor play areas
• Giant Sandpit
• Hands—on Science and Technology Museum
• Toybox
• Costume Museum
• Transport Museum
• Colliery Tours
• Nature Walks
• Refreshments
• Lunch

If you are interested in attending please could you let either Jeannie Dalgleish or Christine Westmoreland know how many people  might attend.

Jeannie Dalgleish (Fanconi Hope) on 0845 271 2811 or e-mail Jeannie  or

Christine Westmoreland (Fanconi Anaemia Breakthrough) on 0115 926 9634

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 research as a means to furthering research into cancers in general.

The conference was attended by 25 researchers from the FA  molecular/cell biologist community and also a representative from the FA gene therapy community, Prof  Linda Lako, whose research Fanconi Hope is currently funding.

A representative from Fanconi Hope was kindly invited to attend and to speak briefly at the outset to explain the charity’s role in trying to bring together the UK FA research community and in expediting FA research.

It was very encouraging to see so many of the the researchers meeting for the first time and discussing ways of helping each other. It was also gratifying to realise that there were now in excess of 25 researchers from across the UK working in just this one area of FA research – molecular biology.  When you add the researchers working in other aspects of FA research it proves there is a significant body of research now in the UK devoted to Fanconi Anaemia.

One of the conclusions from the event was that there was an appetite for further such events. Fanconi Hope fully supports this and intends to be actively involved in the organisation of future research conferences not only in the molecular biology field but in FA research more generally.

The programme of events can be downloaded here.

Prof Lako discussing her Gene TherapyResearch	Prof Neil McDonald and Dr Helen Walden in discussion during the coffee break	Dr Ambrose Cole discusses the FA Core Complex	Question Time

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 day conference and was able to meet with a large number of researchers in the gene therapy community to promote the concept of using FA as a target for their research. Fanconi Hope’s sponsorship of the event, entailed covering travel expenses for  Dr Juan Bueren, one of the world’s leading researchers of gene therapy in Fanconi Anaemia, who presented on his ground-breaking work. Fanconi Hope also paid for a ‘bag drop’ which allowed us to target the gene therapy research community with an information sheet to encourage them to consider using FA as the basis of their research.

Fanconi Hope has Trustee membership of the BSGT and is now an official charity sponsor.  Our logo can now be seen on their Charity partners web page. We recognise the tremendous significance of gene therapy as a potential cure for FA and are seeking to expedite the move from basic research to clinical trials through helping to link relevant groups and individuals and through lobbying for Eu funding to support trials.

Our Information Sheet for the Gene Therapy research community	Thomas Carroll presenting on “Fanconi…hope: from ‘Saviour Sibling’ to gene therapy”	Thomas (left) in discussion withProf Adrian Thrasher (2nd L), current BSGT president and Prof Len Seymour, past president.(on right)

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 so many.’

The book can be pre-ordered on Amazon

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 by Camp Sunshine to and from the Portland International Jetport in Maine.  Airfare is not included; however, limited scholarship assistance is available for families to help with some of the costs associated with travel. If you would like an application for scholarship assistance, please contact Teresa Kennedy.

Families will stay onsite at Camp Sunshine in their private family units. There is a well-staffed kitchen onsite that prepares all of the meals.  Parents will attend presentations by physicians while the children participate in fun, summer-camp group activities (swimming, crafts, games, sports, boating, cooking, singing, etc.) with volunteers. The volunteers have all had extensive background checks. Many of the volunteers attend the FA camp each summer. Of course, you are welcome to be with your children to make sure that they feel comfortable. And, there is a physician onsite.

Visiting www.campsunhine.org should give you a good idea about what to expect from their program in terms of activities for children.”

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However, in the first instance please check with your consultant whether transatlantic air travel is advisable, as very low platelet counts are of particular concern.

And don’t forget our Travel Insurance Information Sheet to find the names of insurers who are happy to cover FA patients.

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 giving a talk entitled “Fanconi…hope: from ‘Saviour Sibling’ to gene therapy” on Monday 31st March and Dr Juan Bueren, who also presented at our Family Meeting will be talking on Wed 31st March on “Gene Therapy and Cell Reprogramming Approaches in Fanconi Anemia”

Fanconi Hope, who have Trustee membership of the BSGT, are sponsoring Dr Bueren’s attendance expenses and paying for a ‘bag drop’ which allows us to disseminate targetted Fanconi Hope literature to all those involved in Gene Therapy. This material will seek to persuade them to consider using Fanconi Anaemia as a basis for Gene Therapy research and trials.

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. The organisers of the Charity have said they are happy to offer their services to, and collaborate with, Fanconi Hope in whatever way is most beneficial and we have responded likewise. Collaboration in funding research is one such area to be explored further.

Steven’s Association Moonrise is a non profit making organisation which has been launched in memory of Steven Keyes. Steven’s Association Moonrise is dedicated to raising money for the purpose of research into and raising awareness about Fanconi anaemia (FA) and its associated problems. Funds raised by Steven’s Association Moonrise will be used to support treatment iniatives for Fanconi Anaemia and the associated challenges this condition poses for successful stem cell/bone marrow transplant and cancer prevention and treatment.

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 us spread the word please. Follow this link to find out more about the survey http://bit.ly/9IsnC3. It should take only 5 minutes to complete.”