Archive for the ‘Families’ Category

Good News about the new UK FA Registry!

Wednesday, February 21st, 2018

Beth Lee – Fanconi Hope FA Coordinator

A Message from Beth Lee, our Fanconi Hope Research and Liaison Coordinator, about the new UK FA Registry and how you can participate:

It was lovely to meet many of you at the Family Day in October.  As discussed on the day, we would like to start the Fanconi Hope funded registry. This study will be used to gather data about the care of FA patients across the UK and will give us insights into the care given and help us to improve care, especially as FA patients get older.
The good news is we now have ethical approval to start the study. Therefore, I will be sending out all the information about the Fanconi registry to you. Please read through it carefully and if you would like to take part all you need to do is give your consent. We can then arrange a phone call and talk through the questions together or you can send me the information required, whichever option is best for you.
If the charity does not have your home address or email and you would like to be a part of this study, please let us know so that you can be involved.
I look forward to hearing from you,
Beth Lee Fanconi Hope Research and Liaison Coordinator
You can contact Beth at She will be delighted to hear from you!

Newsletter and Info from FA Conference now available

Sunday, December 24th, 2017

Fanconi Hope held a successful Conference and Family Fun Day on Oct 14th near Birmingham. You can download some of the presentations and see some of the photos here

Read our Dec 2017 Newsletter now.

What you CAN do with Fanconi Anaemia.

Saturday, June 3rd, 2017

Here’s an encouraging story about Amy Parry on her forthcoming trip to undertake voluntary work in Cambodia – 8 years post-bone marrow transplant.

Amy was diagnosed with Fanconi Anaemia in April 2008, and by February 2009 she was in hospital getting ready for a bone marrow transplant. After her chemotherapy she had the transplant, and everything seemed fine. Unfortunately the transplant failed and she had to have another period of chemotherapy before a second transplant in May 2009.

There were a number of problems that followed, and many difficulties, but eventually in February 2010 she was allowed to leave hospital, albeit still being fed through TPN, to try and resume some sort of normal life. She returned to school after an absence of 18 months, and then began to resume normal life.

There continued to be a number of hospital appointments, tests and investigations, but things did return to almost normal, which is where she is now.

In October 2015 she had started Year 10 at school and there was a presentation from Camps International about a trip to Cambodia in July 2017.This consists of 3 weeks volunteering in local communities, leaving a lasting legacy from the work to be done, and some cultural experiences as well as the adventure – learning to SCUBA dive.

Amy asked to go, and we filled the form in, but inevitably we were asked for medical confirmation that she was fit to go. It took about 3 months before she was finally given the confirmation that she could go on the trip, although we are still trying to access a specialist diving report to confirm she can do the scuba diving.

We are putting this on the website to show that even when things seem at their worst (and we know what that feels like) there is light at the end of the tunnel, and there is no reason why anyone shouldn’t be able to do ‘normal’ things.

Amy also has to raise the money to go, and has a Just Giving page here

If anyone wants any further information, or perhaps for us to come and talk to a group, please contact us via Fanconi Hope.

£8000 Grant Awarded to Fanconi Hope!

Sunday, March 19th, 2017



We are pleased to announce that we have been awarded a grant of £8000 by the Duke of Devonshire’s Charitable Trust to help fund our Study into the Long Terms Effects and Treatment of Fanconi Anaemia, led by Dr Stefan Meyer in Manchester. This grant will make a significant contribution towards  the consolidation of the study and our ability to develop it as a long term activity with continued funding for Beth Lee to act as UK FA Coordinator, thereby providing the much-needed support to the FA community in the UK.  More about the study here.

Our thanks go to both the Duke of Devonshire’s Trust and to our patron, the Duchess of Devonshire, who invited us to apply for the grant.