A youngster from Cranleigh will be making a splash for charity on Friday 17 May as he swims a mile in memory of his late cousin, who died at just five-years-old from a rare form of cancer called Neuroblastoma.
There are some fabulous prizes on offer for Anna’s Auction - take a look and send your bid to email@example.com before midnight on 29 March (this Friday!).
Our Patron, Alan Carr has donated a wonderful prize for Anna Carter’s auction. He will host two lucky winners to a filming at Pinewood studios of his new show 'There's Something About Movies'. Come and be Alan's guest, see the show and join Alan with all the other celebs for photos and a couple of glasses of bubbly. Truly an experience to remember.
Don Felder of The Eagles, having heard Lizzy Bremer’s story was recently moved to send a signed guitar all the way from Los Angeles in the hope that her family might auction it to raise as much as they can for both the Great Ormond Street Hospital (where Lizzy was cared for) and Neuroblastoma UK.
The International Society of Paediatric Oncology, European Neuroblastoma (SIOPEN), is the grouping of neuroblastoma clinicians from Europe and other affiliated countries. Their major yearly meeting is the Autumn AGM, this year hosted by Dr Isaac Yaniv and Dr Shifra Ash in Jerusalem. Here we report on the major themes of the meeting, focusing on current and recent clinical trials run within SIOPEN.
We very much welcome the decision by the Scottish Medicines Consortium (SMC) to approve the use of Dinutuximab beta for children with neuroblastoma in Scotland.
Read the full press release below:
NBUK statement on SMC decision to fund Dinutuximab beta for children
Neuroblastoma UK has welcomed today’s announcement by the Scottish Medicines Consortium (SMC) that it has approved Dinutuximab beta for funding in the NHS in Scotland.
Dinutuximab beta is used to treat high-risk neuroblastoma, a rare and life-threatening disease affecting around 50 children in the UK each year and a clinical research trial showed Dinutuximab beta was effective in increasing survival for these patients.
Chair of Neuroblastoma UK, Tony Heddon said ‘This is fantastic news for the families in Scotland of newly diagnosed children with this cancer and ensures that they will receive the same standard of care as other children in the rest of the UK’.
Tony Heddon, Chair of Neuroblastoma UK added “It is imperative that children have access to the latest treatments and that we continue to invest in research into this terrible disease. Through doing so we will improve survival from 40% to 85% as has been achieved in childhood leukaemia.”
Notes for Editors:
Dinutuximab beta is a monoclonal antibody used as second-line treatment for children who have high-risk neuroblastoma, which has an increased chance of coming back. The drug works by binding to GD2, a glycolipid, which is present in high amounts on the surface of neuroblastoma cells, but not normal cells. When Dinutuximab beta attaches to the neuroblastoma cells, it makes them a target for the body’s immune system, which then kills the cancer cells.
Dinutuximab beta was approved by the European Medicines Agency in May 2017 and by the National Institute for Health and Care Excellence (NICE) in July 2018.
Neuroblastoma UK is a charity funding research into neuroblastoma to find a cure and deliver new, effective, and kinder treatments.
Neuroblastoma is an aggressive childhood cancer, with 1 in 6 of all children’s cancer deaths due to Neuroblastoma.
Neuroblastoma is the second most common solid tumour in childhood and the most frequent single type of cancer in the first year of life.
Research for a cure is largely dependent upon funding provided by charities such as Neuroblastoma UK, who is a major funder of research into Neuroblastoma, and has funded £5M worth of research in the UK.
Since Neuroblastoma UK (formally The Neuroblastoma Society) was established (1982), 5-year survival of children aged 1 – 14 years old with Neuroblastoma has doubled from 34% to 68%.
For Neuroblastoma UK: Alastair Whitington, firstname.lastname@example.org, 07939 507798
Tony Heddon, email@example.com
The final guidance on the use of Dinutuximab beta for treating high risk neuroblastoma has been published by NICE. Visit their website for details.