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Energy Council Partners with World's Leading Brain Cancer Charities for 2024
By Amy Miller, CEO, Energy Council
Published 31 January 2024
When I joined the Energy Council in September 2013, 2 of the first people I met were Martin Bell (now Partner at Boston Consulting Group) and his wife Katie Bernard (now VP New Ventures at Parex Resources). Both have been advocates of the Energy Council and me personally for over 10 years and are dedicated to the Energy industry.
In October 2021, after over a year of terrible headaches and sickness, their son Alex was diagnosed, at the age of 20, with an extremely rare form of brain cancer called Diffuse Leptomeningeal Glioneuronal Tumours (DLGNT) which is a type of paediatric low-grade glioma (pLGG). You can hear more about their journey so far here.
Since then, Martin and Katie have been dedicated to raising awareness and fundraising. When working with such a rare paediatric brain tumour, it is imperative that there is an international approach to data collection and research. With that in mind:
- In the UK/Europe money they raise will fund much needed research into DLGNT at The Everest Centre by creating a full time post graduate research position either in Heidelberg (DKFZ) or London (UCL or QMUL).
- As research requires access to data and tissue samples, in the USA they will fund a brain tissue and data bank at the Children’s Brain Tumour Network (CBTN) in Chicago. They will also create two additional full time post graduate positions at Toronto Sick Kids in Canada and Memorial Sloan Kettering Cancer Centre in New York. Tissue and data collected and stored at CBTN will then be available for research into pLGG and DLGNT, at both Toronto Sick Kids and at The Everest Centre.
To achieve these goals, they have partnered with the Brain Tumour Charity in the UK, the Pediatric Brain Tumour Foundation (PBTF or Cure the Kids) in the United States and Kindred Foundation in Canada and now the Energy Council has too!
To donate to one of these charities, you can use the following links:
We are looking for your support!
In case you are still not sure whether to donate, a few not so fun facts:
- Brain tumours are the biggest cancer killer of children and adults under 40
- Brain tumours reduce life expectancy by 27 years on average – the highest of any cancer
- Only 12% of adults survive for 5 years after diagnosis
- Brain tumour research represents only 1% of the national spend on cancer
- There have been no new treatments developed over the last 20 years
The fundraising continues in February as Martin will take part in the Everest in the Alps challenge. Everest in the Alps is an extreme alpine challenge set up by Rob Ritchie in 2015 to raise money for the Brain Tumour Charity after his son Toby was diagnosed with a low-grade brain tumour at the age of five. The challenge is to ascend 8,848 metres – equivalent to the height of the world's largest mountain – on skis over four days and is akin to running three back-to-back marathons. You can watch Martin’s story so far here: