Archive for the ‘Charity’ Category

£8000 Grant Awarded to Fanconi Hope!

Sunday, March 19th, 2017

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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.

 

In Memory of Joel Walker

Sunday, November 13th, 2016
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          Joel Walker

We have received this tragic news from Nigel Walker, who now lives in Plano, Texas about his son Joel who had Fanconi Anaemia. This follows the earlier loss of his daughter Joanne, also to FA.

“It is with an even heavier heart that I send this note to everyone tonight.  Around 7:30 pm on 1st Nov 2016 we received a call from Kineret that Joel’s tumor was undergoing some significant bleeding at the tumor site so she rushed him to the ER with the ambulance team but sadly they were unable to prevent the hemorrhaging so he passed away at approximately 8:10 PM central time with the family present at the hospital. Kin was an incredibly caring and wondrous person to the end and did everything to make Joel both comfortable and loved.  They actually got engaged this weekend so that makes her even more special in our eyes. Joel was very brave during this adversity and in fact had decided just today not to seek home hospice care but to try a new avenue of treatment for both pain management and increase of platelet count.  He was very positive about the visit with Dr. Thuy Le and was anxious to see what was next chapter in his unbelievable journey.  Clearly this was not in our thoughts what was about to unfold today so we are somewhat bewildered on what happens next.  However we will recover.  Thanks for all your prayers and thoughts during this last year. Amazingly he had his first surgery a year ago today at MD Anderson to perform the laryngectomy so we are glad he survived the year to be with us!!”  Nigel Walker.

If there is anything good to have come out of this it is that through Nigel’s encouragement to relatives and friends to donate to FARF and Fanconi Hope in the last few weeks in particular, we have had a very significant boost to our funds which will allow us to extend our vital research work here in the UK and in an international context, the International FA Gene Therapy Working Group. This will enable us to continue the fight to improve the lives of those living with FA, and we are very grateful to Nigel, his family and friends for their support through what must be such difficult times.

 

 

 

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