Neuroblastoma UK News  
December 2017
 
Dear Supporter
 
Welcome to our December newsletter.
 
Guy Blanchard, our Chair, reports on happenings within the Charity - a time of change where we say goodbye to long standing trustees and welcome new faces.
 
The appraisal of the drug Dinutuximab beta by NICE continues and we report on the latest meeting.
 
And we hear from Reuben's family on their neuroblastoma journey.  
 
As the year comes to an end, and the holiday season is upon us, it can be a time of joy. Sadly, it can also be a time of sorrow and reflection.
 
We wish all of you a peaceful Christmas, our best wishes for 2018 and our thanks for your support.
 
 
 
Message from the Chair 
 
Chair, Guy Blanchard, reports on activity within the Charity with an update on our Neuroblastoma Research Symposium and our grants round.
 
 
NICE Appraisal - Update 
 
Deputy Chair, Tony Heddon, updates us on the current NICE Appraisal of the immunotherapy drug Dinutuximab beta.
 
 
Reuben's Story  
 
In December 2016, shortly before his third birthday, Reuben Virdee was diagnosed with stage 4 high risk neuroblastoma.  As Reuben approaches his fourth birthday, his mum, Jess, shares the family’s experience of the past year in coming to terms with neuroblastoma, Reuben’s treatment and their concerns for the future.
 
 
From the Desert to the Jungle 
 
Article ImageMeet Lee, pictured here after he'd completed the gruelling Marathon des Sables in aid of Neuroblastoma UK last year. Lee has now taken up the challenge of the Amazon Jungle Ultra which he'll be running in June 2018 - a five stage, 230km race through the Amazon Rainforest.
 
Lee clearly relishes a challenge and this venture will not disappoint!  His motivation stems from a family friend's child being diagnosed with neuroblastoma.  We are hugely grateful to Lee and to everyone who has donated.  If you would like to support Lee, please visit his fundraising page and give him a boost.  
 
 
Honorary Treasurer
  
If you have:
  • A head for figures and experience in financial accounting
  • An absolute desire to help make a difference for children with neuroblastoma
  • The time to take a hands on approach to the job
Then we need to hear from you!  
 
We are seeking a new Treasurer to assist us in ensuring the funds raised by our supporters are efficiently and effectively utilised in our mission to fund research for new, effective and kinder treatments.
 
 
 
 

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