July23, 2017: The neuroblastoma charity Niamh’s Next Step was founded by Chris and Sam Curry after the loss of their 5 year old daughter Niamh to neuroblastoma in May 2012. Niamh was diagnosed with neuroblastoma 18 months prior to her passing.
Neuroblastoma is a rare form of childhood cancer mostly effecting children under the age of five. Each year about 100 children in the U.K. are diagnosed with neuroblastoma. This type of cancer develops from the neuroblasts, a type of undifferentiated nerve cells, and usually originates from the belly and the adrenal glands in the form of a solid tumor. The symptoms of neuroblastoma are often vague causing it to be diagnosed only in its late stages (stage IV). Symptoms include constipation, aches, swollen glands and skin bruises. When diagnosed in babies it can sometimes go into remission on its own; however when diagnosed in older children it often requires surgery and follow up chemotherapy and radiation therapy treatments. Unfortunately, children in remission from neuroblastoma can have a relapse. Relapsed neuroblastoma is more resistant to chemotherapy and is more challenging to treat. The survival rate to neuroblastoma is only 30% with better outcome for low grade neuroblastoma (cells grow at a slower rate). We have published on other two children affected by neuroblastoma: Harvey Hext and Chloe Balloqui who represent polar opposite outcomes of this disease. While Harvey unfortunately lost his battle with the disease, Chloe is in remission and doing remarkably well.
Neuroblastoma is still poorly understood and thus treatments are limited and not well tailored for children. This is because unfortunately, scientific research in this area lags well behind other types cancer research because resources are not set aside specifically for investigating neuroblastoma.
Niahm’s Next Step was founded specifically to try to fill this gap by raising funds dedicated to neuroblastoma research. Indeed, since 2014, Niamh’s Next Step has been raising funds for SIOPEN (International Society of Paediatric Oncology Europe Neuroblastoma Group). SIOPEN maintains a database containing all the data on clinical trials from the European countries that run High Risk Neuroblastoma studies. These data are collected and analyzed to benefit children with Neuroblastoma from the participating countries including the U.K. Since September 2016, Niamh’s Next Step has been also supporting a collaborative Neuroblastoma research between Sparks and Great Ormond Street Children’s Hospital lead by dr. Sala who is investigating the use of stem cells to kill neuroblastoma cancer cells. Finally, Niamh’s Next Step has been supporting reasearch at the Institute of cancer research at Newcastle University where the team lead by Professor Tweddle is looking to develop new “targeted” therapies that kill neuroblastoma cells while sparing normal cells.
Niamh’s Next Step relies on business supporters and donations, and on the support of patrons in the entertainment and sport industries to raise its much needed funds and awareness of the disease. Louis Tomlinson’s mom Johannah Deakin was one of Niamh’s Next Step patrons. In our article published on January 10th, 2017, we talked about how Johannah got to meet Niamh’s parents in 2015 through Harry Styles’ mom Anne Twist who had met them at a Believe in Magic event. Jay invited Niamh’s parents to a One Direction concert in Birmingham as a treat to Niamh’s sister Hanna birthday. Unfortunately, Johannah was patron of this charity for only a year before her passing on December 7th 2016 from an aggressive form of leukemia.
Today Niamh’s Next Step got verified on twitter and its 55k+ followers on twitter are a testament that their efforts in spreading awareness on neuroblastoma are paying off. You can support their work by donating at this link.
Images are credited to Niamh’s Next Step.