Message from our outgoing Chair

I am pleased to report that 2017 was an excellent fundraising year – thank you to everyone who raised money last year. Our goal is to reach £1M by early 2019 so that we can fund the development of vital new treatments in our next grant round. So please spread the word and continue the good work.

Having been Acting Chair since January 2017, I am pleased that Tony Heddon will now take over as Chair. Tony has been Deputy Chair since last Autumn and has immersed himself in the important neuroblastoma issues, notably the NICE process to evaluate the anti-GD2 drug Dinutuximab beta, and has familiarised himself with the UK neuroblastoma landscape, making good contacts in relevant areas. Tony brings considerable energy and charm to what he does, and will be ably supported by a strong team of strategic Trustees, Medical Trustees and volunteers.

I took on the Acting Chair role believing that Neuroblastoma UK continues to have a very important role to play in funding UK collaborative research and representing patients and parents. While the fundraising climate changes year-on-year, treatment crises arise and the landscape of UK neuroblastoma charities remains dynamic, NBUK needs to be there as an independent and experienced voice to represent children with this terrible disease. A charity run exclusively by unpaid Trustees and volunteers is still very much a valid model. Fundraisers and donors are motivated by the fact that over 90% of funds raised will go directly to finding new treatments. NBUK will continue funding the best UK collaborative research until all children with neuroblastoma can expect to survive and with no long-term effects of treatment.

I would particularly like to thank Shirley Clark, our Secretary, and all Trustees and volunteers for their hard work over the last year. I will return to the Research Trustee role and will be busy with our next Grant Round deadline on 1st October 2018 and our 5th Neuroblastoma Research Symposium in Cambridge in the Spring of 2019.

 

Guy Blanchard