Why I campaign – Holly’s story

3 min read

Our dedicated brain tumour campaigners are passionate about doing what they can to improve options and outcomes for brain tumour patients. The routes taken to becoming politically active vary, but the commitment is always heartfelt because it is always personal.

Holly Roberts’ son Larsen was just five years old when, in December 2019, he died from a rare, high-grade medulloepithelioma (MEPL). Larsen was initially misdiagnosed with a lazy eye, and later an optic pathway glioma (OPG). After doctors finally discovered the aggressive nature of his tumour, Larsen underwent extensive treatment, including a gruelling course of chemotherapy, which ultimately proved to be too harsh for his young body to handle.

Holly campaigns for more funding for brain tumour research to help prevent other families from experiencing the same devastation.

She said: “Gradually, I’ve been able to channel some of my grief into raising awareness of the lack of options for brain tumour patients like Larsen. I supported the #BrainTumourPetition calling on the Government to stop the devastation caused by this horrendous disease.

"I have engaged with our MP Nadia Whittome too because I wanted her to be aware of the issues surrounding our loss. She has been brilliant and asked the Secretary of State for Health and Social Care what steps his department is taking to improve outcomes for brain tumour patients. I will continue to engage with her and other politicians to encourage them to address the injustices surrounding this disease.

“I can’t change what has happened but I am determined to influence what will happen.”

Brain Tumour Research is shining a spotlight on the urgent need for more investment into research to find a cure for this devastating disease, and we have achieved some key milestones with the help of our campaigners over the years. If you would like to campaign with us, please fill in the online form here.

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