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Joining Against Cancer in Kids

Landmark Trans-Atlantic Trial for Children with High-Risk Neuroblastoma

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In a landmark in paediatric oncology research, children with high-risk Neuroblastoma across Europe and North America will be treated together for the first time, following the award of $1.3M to fund a new trans- Atlantic clinical trial led by Dr Yael Mosse of Children’s Hospital of Philadelphia and Dr Diminique Valteau-Couanet of Instituate Gustave Roussy in France, investigating the ALK inhibitor Loriatinib in the treatment of children with newly diagnosed high-risk Neuroblastoma, a deadly childhood cancer that mainly affects children under the age of five.

This ground-breaking research, known as TITAN, transatlantic Integration Targeting ALK in Neuroblastoma is being made possible by collaborative funding from seven parent-led neuroblastoma clinical research charities:

Band of Parents, Joining Against Cancer in Kids (J-A-C-K), Ronan Thompson Foundation, Solving Kids’ Cancer UK, Solving Kids’ Cancer (New York), Wade’s Army and Zoé4life.

The proposal, “ Integration of Loriatinib to improve outcomes for patients with high-risk ALK-driven neuroblastoma: A COG and SIOPEN international collaboration” is the first International Neuroblastoma Research Initiative award to be funded under Solving Kids’ Cancer UK’s AMRC-accredited research funding call and follows an extensive and stringent scientific review process.

Speaking on behalf of the group of funding partners, Nick Bird Research Director at Solving Kids’ Cancer UK said “We are proud to be driving forward innovation to provide new hope to children and families shattered by a neuroblastoma diagnosis, and are thankful to members of the research community who stepped up and came together to meet the spirit of our challenge grant call.

“Making the first ever study of this kind a reality stands as a testament of what passionate like-minded charities and non-profit organisations can do if they come together for the greater

Richard Brown, [J-A-C-K], said, “A child diagnosed with high-risk neuroblastoma is a rare individual facing enormous battles; the cancer must not prosper as a consequence of their isolation. The collaboration of international teams to stand together and fund and deliver trials to the children diminishes isolation and accelerates an answer to their cancer.

The new study will be integrated to form part of the ongoing COG and SIOPEN Phase 3 high-risk neuroblastoma trials, and will involve children at Children’s Oncology Group hospitals and SIOPEN institutions across Europe and the UK having their tumours being tested for mutations in the ALK gene when they are first diagnosed. Such mutations are found in around 15% of patients and represents a group of children who currently have inferior outcomes with the existing multi-modal treatment regimen. Children whose tumours are found to have ALK mutations will soon be treated with the addition of Lorlatinib, a third-generation ALK inhibitor manufactured and supplied by the pharmaceutical company Pfizer.

Professor Andy Pearson, Chair of Solving Kids’ Cancer Scientific Advisory Board, said, “The SKC 2018 RFA has been an enormous catalyst for international collaboration. The Lorlatinib trial itself is a landmark in clinical research for children with neuroblastoma. The approach is a paradigm to individualise therapy and can be a prototype for other molecular sub-types which ultimately will result in widespread benefits for all children with this cancer.”

Principal investigators: Dr Yael Mossé of Children’s Hospital of Philadelphia and Dr Dominique Valteau-Couanet of Institute Gustave Roussy.

Total RFA award $1.4M
Award for selected project: $1.3M
J-A-C-K contribution: $200,000
Date of award: November 2020.

Jack Brown

Jack Brown
Emergency Grant for Neuroblastoma FamiliesFunds have been made available by J-A-C-K and Solving Kids’ Cancer to help families in the UK affected by Neuroblastoma

An Emergency grant is available for Neuroblastoma families facing financial loss or increased costs because of Coronavirus measures.

Funds have been made available by J-A-C-K and Solving Kids’ Cancer to help families in the UK affected by Neuroblastoma (low, intermediate or high-risk), who face financial loss or increased costs due to the Coronavirus pandemic.

Guidelines have been issued by the Children’s Cancer and Leukaemia Group asking that families of children and young people on active cancer treatment, or within 6 months following the completion of treatment, stay at home for the next 12 weeks. These guidelines are being reviewed and updated on an ongoing basis. This is in line with the government guidance.

Parents / Guardians who are self-isolating alongside the child and that suffer financial loss or increased costs as a result may apply to the emergency fund for an initial grant towards their immediate subsistence costs.

Emergency grants of £250 are available now for those who are facing financial loss or increased costs as a result of the need of their child to stay home for the stated 12 weeks.

Additional support may be made available at a later stage for families facing acute financial loss because of the rapidly evolving public health crisis.

Criteria for accessing the grant is as follows;

  • You are the guardian of a child with Neuroblastoma (low, intermediate or high-risk) who is currently in active treatment, or within 6 months following the completion of treatment (at the point of application).
  • You have suffered financial loss or increased costs as a result of the need to self-isolate with your child which cannot be remedied by the emergency measures in place which can be found on the government website which is being continually updated. Also here.

To apply for the £250 emergency grant simply complete the form below and submit it by email to familygrant@solvingkidscancer.org.uk along with a copy of a letter or other documentary evidence from your Clinician or Medical institution which provides evidence of the active treatment of your child or treatment within the last six months (of the date of application).

We, at JACK, are thankful for the ability to provide money alongside SKC to the emergency fund for families. We are grateful to Solving Kids Cancer UK for administering the process and applications for the grant must be made via the email to Solving Kids Cancer.