Every week in the UK 2 children are diagnosed with neuroblastoma. The
prognosis for babies and children affected by neuroblastoma varies
greatly. Unfortunately the largest group of patients fall into the
'high-risk' category where despite intensive treatment, the majority are
Children with advanced neuroblastoma can receive chemotherapy,
surgery, radiation therapy, stem cell transplant, and immunotherapy.
Specialists in America and Europe are working together, sharing
information and trialling different treatments in different countries. A
range of different treatments using special antibodies are being
trialled in Europe—including the UK—and the USA.
The criteria for
participation in these trials vary to some extent, which is why some
children have to travel to America or Germany. In addition, not all treatments are available in this country. The Neuroblastoma
Alliance funds their treatment abroad which is why we need your
If you are the parent of a child that has been diagnosed with
neuroblastoma and would like to find out if we can help you, please get
in touch. You can contact us by:
Telephone 020 8203 0100
Fax 084 4774 6407
In writing to:
Alison Moy, Chief Executive
Neuroblastoma Children's Cancer Alliance
3-4 Sentinel Square
London NW4 2EL
-or by using the form below.
Ultimately, we want to improve the outcome for all children with neuroblastoma.
Please join us. Help us beat childhood cancer.
April 2006 the 2Simple Trust (click the link which takes you to the Charity Commission record and the annual report and accounts) was set up to help Jack Brown who needed
funds for his neuroblastoma treatment in America. More families who needed help
contacted the charity, and over the following years the charity grew to support
more children with neuroblastoma.
In 2011 we moved forward as the Neuroblastoma Children's Cancer Alliance UK (click the link which takes you to the Charity Commission record and our annual report and accounts). We think the new name better reflects our mission and our work. We are an alliance of parents, communities and professionals who want to improve the outcome for all
children with neuroblastoma. Since 2006, we have helped fund treatment for 21 children abroad - more than any other neuroblastoma charity in the UK.
There are four charity trustees. The staff and trustees work closely with an active Parents' Group, who together, will help us to achieve the charity's aims.
Meet some of the team!
- Alison Moy is chief executive.
- Karen Low, who is the charity's director or operations, manages:
- Onyeka Onochie, database manager.
- Kavita Negi, publications officer.
- Julian Shields, accounts assistant (part-time ten hours a week).
- Bettina Bungay-Balway, who is the director of fundraising and marketing. Bettina manages:
- Nikki O'Sullivan, public liaison manager.
- Claire Hislop, community fundraising manager.
- Sarah Higgs, fundraising and partnerships administrator.
Left to right: Karen Low, director of operations
Nikki O'Sullivan, public liaison manager
Alison Moy, chief executive
Please contact us if your child has neuroblastoma and you need help. Get in touch at any time on 020 8203 0100 or 020 8202 9065. We welcome questions about our work.
If you want to raise funds for your child's clinical neuroblastoma treatment abroad, there are good reasons for choosing a well-established charity like the Neuroblastoma Alliance UK to run the charity appeal for funds.
- You get access to a network of families who are going through similar
issues and who will understand what you are experiencing. We support all families affected by neuroblastoma, including those
that have lost a child to the illness.
- As a registered charity, we can claim Gift Aid on donations made to children's appeals. This means that for every £10 donated, the UK government gives us an
- You, your friends and people who want to support your child in your community, get professional fundraising support, guidance and resources. As well as helping with collection boxes, posters, wristbands, leaflets, sponsorship forms, t-shirts and running vests, setting up Virgin Money or Just Giving pages, the Neuroblastoma Alliance has a
full-time fundraising co-ordinator and community fundraiser who will support your fundraising efforts.
- We write promptly to everyone who donates to a child's appeal to say thank you. We keep a proper, auditable record of all the funds raised for each child’s appeal.
- We make sure that Justgiving and Virgin Money Giving page appeal totals are updated regularly with the total donations so that everyone can see at a glance how much appeal have raised.
- We send a thank you certificate to display when funds have been raised by group of people or organisation so that everyone who has donated can see that all the funds raised have gone to the charity.
- We also send parents a detailed monthly income report so that families are informed of all the money that has been raised for their child's appeal from every source.
- We can help you publicise your child's story in the media. We offer this service because we recognise that parents whose children have been diagnosed with neuroblastoma may need comprehensive media support to minimise press intrusion. Our PR acts as initial point of contact for all media with support on hand during interviews.
- We hold regular events and meetings for parents, giving you an opportunity to meet
other families affected by neuroblastoma and learn more about the latest
research and treatment into the disease.
- We are able to launch a public appeal when you have a clinical treatment aim for your child.
- If you have started an appeal with another charity but now wish to seek help from the Neuroblastoma Alliance UK, we would be pleased to consider your request for support. Should the Trustees agree to help, we would ask that you have just one public appeal with us. We ask you to do this as the feedback we have received from a range of sources shows us that the public is confused to see the same appeal with two different charities. Having one public appeal also means we can support your fundraising and carry out press and PR work more effectively.
- If you have raised funds from the public for your child’s treatment costs with another charity, we would ask you to arrange for that money to be paid over to the hospital where your child receives treatment.
- The charity was established in 2006 as the 2Simple Trust. Since
then we have helped to fund clinical treatment for 21 children abroad. We are the only UK neuroblastoma charity that has achieved this.
- In the tragic circumstance that your child passes away and there are remaining funds in your child's treatment cost appeal, we will ask you to decide how you wish the funds to be used: to help another child, to fund research or education, or a mixture of these options.
- The charity has an established board of trustees that includes a parent
representative, a paediatric oncologist and other professionals. You can see Charity Commission details of the 2Simple Trust governance and accounting records and the Neuroblastoma Alliance UK by clicking the links. Alternatively visit www.charity-commission.gov.uk
and search under our current registration number (1135601) and the 2Simple
Trust registration number (1113954) to find out more.