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UK and Ireland Fanconi Anaemia Clinicians/Family Meeting.

The first UK and Irish FA combined family and clinicians meeting, organised by Fanconi Hope was held in the grounds of Chatsworth House, the ancestral home of our patron, the Duchess of Devonshire. The first day’s meeting was held in the farmyard/ adventure playground, which was perfect for entertaining the children and provided an informal setting for the meeting.

16 families from all over the British Isles attended and the patients ranged in age from 3 to 23. A number of UK Clinicians with an interest in FA attended, as well as invited speakers from Germany Spain and the UK. It was wonderful to have the opportunity for family members to talk to these interested professionals over a cup of tea. We also welcomed Marie Pierre and Christophe Bichet and Ralf Dietrich, representing the French and German FA Family Groups respectively. In total around 60 specialists, parents and children attended.

Workshops were set up throughout the room where families were then given the opportunity to talk to nutritionists or have help in interpreting some of the medical terms and jargon that relate to the condition. In addition a representative from the charity Contact-a-Family was there to offer advice on who to contact regarding the practical difficulties of having an ill child and information on the range of counselling services.

An impressive line-up of speakers followed a buffet lunch. Dr. Beki James (Genetics and Epidemiology unit, University of York) discussed the progress being made in the U.K. towards a registry of all UK Fanconi patients, (the UKIFAR). She explained the importance of this in facilitating future research as well as maintaining consistent standards of care across the UK.

Dr. Holger Tönnies (Institut fur Humangenetik, Universitatsklinikum Schleswig-Holsten, Kiel, Germany) explained in detail the progress being made in the chromosomal analysis of blood and bone marrow and discussed its usefulness to clinicians and advantages to patients.

Ms. Evelyn Ward (Paediatric Dietician, St. James’ Hospital, Leeds) gave details of the dietary difficulties Fanconi patients experience along with some practical advice. An interesting discussion took place with a complementary medicine nutritionist on the possible advantages of using dietary supplements.

The last speaker of the afternoon was Dr. Juan Beuren (Hematopoiesis and Gene Therapy Division, CIEMAT, Madrid Spain) He gave us a fascinating insight into the current gene therapy research as applied to FA and discussed future possibilities.

Meanwhile, the children and a few adults enjoyed the animal handling session- and no doubt in those families the demand for guinea pigs in all households will have increased. Later they enjoyed a bumpy ride on a tractor and trailer around the estate where the saw deer and some of the beautiful sculptures that adorn the extensive grounds.  The children were given the chance to try milking which was “very hard”. When they decided on a change of scene they had a chance to explore the exciting adventure playground and play in the huge sandpit.

After a short break the meeting reconvened in a local award winning restaurant. The cheerful staff didn’t seem to mind small children running around or the art workshop set up to amuse the children. The last presentation of the day was given by Prof. Adrian Thrasher (Paediatric Immunologist, Great Ormond Street, London). He gave families and clinicians an insight into the challenges in setting up and participating in gene therapy trials.

The following day an informal meeting was held to discuss the previous day’s events, to reflect upon the progress the charity has made in its first year and consider future plans. The meeting ended with an inspirational talk from Paul Carruthers, an FA supporter who had just completed a cycle ride from Lands End to John O’Groats, a distance of almost 900 miles, raising a magnificent £2000 for the Fanconi Hope Charity.

We were also able to offer FA patients the chance to take part in a research programme screening for mouth cancer run by Eunike Velleuer with the help of Ralf Dietrich.

We received lots of positive feedback from both families and clinician and the general consensus was that it was a huge success.

And finally a selection of quotes from the feedback forms received:

“Overall, very informative.”

“It gave me enthusiasm and hope in the future for FA sufferers.”

“Good to have a balance of serious informative events and relaxing chat.”

“Great venue for kids, and the people all mixed well.”

“Ideal venue to keep the kids entertained and a million miles away from having them endure another hospital visit in order for us to find out more”

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 and Martin Barrett organised a Film Quiz Night in Wanstead raising over £2000 
•  Paul Carruthers  cycled from Lands End to John O’Groats raising over £3100
• David and Sam McDowell  raised £200 from a cake sale.
• Andy and Jeannie MacGregor from Reigate  held a quiz night, raising  £830.

See more

In addition to this there have been numerous smaller donations, all adding up to a significant total.

We are also now receiving a steady income from your online shopping and through donating a percentage of Ebay sales using ‘Ebay for Charity’ .

So thanks to everyone and keep it up!

For Families:

An information sheet on Head and Neck Cancers by Thomas Carroll, and a sheet on Advice on Nutritional Problems for patients with FA prepared by Ms Evelyn Ward, Paediatric Dietician, St James’ Hospital, Leeds.

For Clinicians:

A guidance document for children’s hand surgeons concerning congenital hand anomalies in Fanconi Anaemia has been prepared by by Ms Grainne Bourke, Consultant Plastic Surgeon, Leeds General Infirmary.

A guide to Nutritional Management of Patients with Fanconi Anaemia has been prepared by Evelyn Ward, Paediatric Dietitian, St James’s University Hospital, Leeds.

Would you like to remember a loved one with a free online tribute page?

Fanconi Hope has partnered with Much Loved – a charity working to help bereaved people – to enable you to create a sensitive, personalised and lasting online memorial to your loved one.

The easy-to-use website allows you and your friends and relatives to post memories, pictures and videos of your loved ones. It is a unique and respectful way of keeping their memory alive.

Further details here

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 G8 poverty march in Edinburgh, as well as singing in a ‘peoples choir’ in Chester Cathedral at Christmas. To stand on the plinth for one hour seemed like a good challenge for this year. I will be sponsored to raise money for Fanconi Hope”  - Jules Sanders

Find out more at http://www.oneandother.co.uk/participants/Jules_S

This is for all the family, as the Friday meeting venue is within the Chatsworth Farm and Adventure Playground area and is highly recommended for children. Around 50 people will be attending, including families, clinicians, international guest speakers, representatives from French and German FA support groups and a Genetics counsellor from Contact a Family who can provide information on the range of services on offer to FA families.

The Friday meeting session consists of an informal get-together from 11am to 1pm followed by presentations from guest speakers. During these presentations, childrens activities are on offer, including animal handling and a tractor-pulled coach trip around the estate, not to mention the extensive adventure playground. A meal is being provided for everyone at Rowleys, a local restaurant at 6.30pm.

On Saturday morning there will be a less formal get-together giving families the opporutnitiy to get to know each other more and find out what the Fanconi Hope Charity is planning to do.

We  have around 11 families confirmed so far (a total of around 30 adults and children), but are hoping for more, so please come!

The meeting will have an international flavour as we will be welcoming Mme Marie-Pierre Bichet and Mr Ralf Dietrich from the French and German FA Family Associations respectively, as well as our Guest Speakers from Germany and Spain.

We’re going to meet up in Derbyshire on the 18th and 19th September. Are you?

• 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 Hope and the percentage (10%-100%) of your final selling price that you’d like to donate.
• Every time you list an item for charity, you’ll get a fee credit on your basic insertion and final value fees equal to the percentage you donate. So if you donate 50% of your selling price to a charity, eBay will waive 50% of your fees.
• Start selling