In February 2014, The Foundation met with Dr Chris Jones of the Institute of Cancer Research in February to discuss the progress of his study, "The role of ACVR1/ALK2 mutations in Diffuse Intrinsic Pontine Glioma (DIPG)" .

The Foundation first funded Dr Jones in 2013 and his study is progressing well. 

He is currently in the process of creating various, different mouse models of the ACVR1/ALK2 mutation in order to develop a better understanding of how tumours with this mutation behave in order to develop drugs that target this mutation. In 2014, Dr Jones and his team identified that these mutations found in DIPG are also shared by patients with a rare genetic condition known as fibrodysplasia ossificans progressiva (FOP) (sometimes referred to as Stone Man Syndrome) that locks people in a second skeleton as they age. As a result of this finding, they have been working closely with FOP researchers who already have developed potential drug leads for targeting these mutations. The Foundation extended a second grant to Dr Jones in July 2014, following a review of his research update and progress by our scientific advisory board. More recently, in June 2015, a further extension was awarded. This new funding will enable Dr Jones and his team to develop further mice models with ACVR1 and PI3 Kinase mutations, based on the prediction that DIPG tumours are more likely to grow in these mice with more than one DIPG mutation, and also due to the synergy observed between ACVR1 and PI3 Kinase inhibitors. Therefore, it is critical to have the appropriate mouse models for testing drug combinations that act on this inhibitor.

Full article about the Stone man syndrome and its mysterious link to childhood brain cancer here.