The Foundation has extended a second £90,000 grant to Dr Chris Jones at The Institute of Cancer Research for the study entitled ‘The role of ACVR1/ALK2 mutations in Diffuse Intrinsic Pontine Glioma'.
The Foundation has approved a second grant of US$300,000 to an international consortium of DIPG researchers.
The press release is published below.
PORTLAND, Ore. – An international consortium of researchers focused on identifying new molecularly targeted drugs to treat the most fatal form of childhood brain tumour, diffuse intrinsic pontine glioma, or DIPG, has been awarded nearly $300,000 by The Lyla Nsouli Foundation for Children's Brain Cancer Research, based in London, England. The foundation was established in memory of 3-year-old Lyla Nsouli, who died in January 2012 after a devastating five-month battle with DIPG.
Lyla's parents, Nadim and Simone Nsouli, are hopeful their contribution will help bring researchers closer to a cure:
"Facing her sudden, brutal diagnosis without any real option for treatment or survival is not an experience any child or their family should ever have to bear. Significantly greater investment in quality research is vital to improving the prognosis for children like Lyla. We are determined that research can provide treatments and eventually a cure for this cruel childhood cancer."
To date, no treatment does more than minimally increase survival of children with DIPG. One day a child may have a headache or unsteadiness, but the next day a family's life is tragically changed. A group of international researchers called the DIPG Preclinical Consortium hopes to change this.
"Our first phase of drug screening and tumour DNA sequencing couldn't have been possible without the support of the Lyla Nsouli Foundation, the Cure Starts Now, Accelerate Brain Cancer Cures and CureSearch Foundations. Now that we have drug leads, the hard work of validating these begins. The Lyla Nsouli Foundation has been with us every step of the way, both in terms of support and accountability — both matter,"
said consortium coordinator Charles Keller, M.D., associate professor of paediatrics at Oregon Health & Science University Doernbecher Children's Hospital and the OHSU Knight Cancer Institute.
"The members of the Children's Oncology Group CNS committee express a deep sense of gratitude to the Lyla Nsouli Foundation for funding the DIPG Preclinical Consortium,"
said Amar Gajjar, M.D., chair of the brain tumour committee for the National Cancer Institute-supported Children's Oncology Group (COG).
"The grant from The Foundation has sparked a global effort to find new and effective therapies using the latest technologies currently available against Diffuse Intrinsic Pontine Glioma. The rapid translation of information from research laboratories to a clinical protocol is an often-sought aim for advancing cancer cure rates – the grant from The Lyla Nsouli Foundation has made this dream a reality."
Gajjar and Maryam Fouladi, M.D., co-chair of the COG brain tumour new agents committee and leader of its Paediatric Brain Tumour Consortium, conceived the DIPG Preclinical Consortium with Keller:
"Real-time science in partnership with the community for a shared goal of finding a two-drug combination to put into international clinical trials for DIPG."
Consortium member Jacques Grill, M.D., Ph.D., Institut Gustave-Roussy, Villejuif, France, innovates by creating living cell cultures not from autopsy-derived tumour samples, but from biopsies from the brainstem. This novel approach was initially controversial but is winning acceptance, Keller noted.
"Grill and his colleague, Dr Darren Hargrave at Great Ormond Street Hospital, London, keep a clear line of communication so that the consortium's results are reported in real time to the European clinical trial groups to inform on that side of the Atlantic,"
said Keller.
"The scientific teams are diverse due to the pressing nature of the need to understand and treat DIPG."
Each member will take a different but complementary role to ensure the results of the robotic drug screen of 17 autopsy- or biopsy-derived DIPG cultures can be validated in mouse models.
"This collaboration has been a wonderful opportunity to work together as a community to move the field closer to an effective therapy for this terrible disease. I am hopeful that, together and with the immense support from The Lyla Nsouli Foundation, we will make real strides forward now,"
said Michelle Monje, M.D., Ph.D., Stanford University Beirne Faculty Scholar in Paediatric Neuro-Oncology, Stanford Cancer Institute, Lucile Packard Children's Hospital.
"The DIPG Preclinical Consortium offers hope where once there was very little. When my son, Andrew, was diagnosed with DIPG in October 2007, I never imagined that such a collaboration would exist a few short years later — a collaboration where exceptional science and a remarkable patient community meet in partnership to change the future for children like Andrew and Lyla,"
said DIPG parent Sandy Smith.
Consortium members include:
