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CAA’s Ben Kouijzer fundraising for cancer care

The 36-year-old CAA London agent is battling malignant peripheral nerve sheath tumour, which needs specialist treatment not available on the NHS

By IQ on 11 May 2020

Ben Kouijzer with fiancée Lotte

Kouijzer with fiancée Lotte


CAA London agent Ben Kouijzer has thanked the international live music industry for its “incredible love, support and generosity”, following a groundswell of support for his fundraising campaign to pay for cancer treatment.

Kouijzer, 36, turned to crowdfunding site GoFundMe after being diagnosed with malignant peripheral nerve sheath tumour (MPNST) – a rare and aggressive form of cancer of the connective tissue surrounding nerves, which in Kouijzer’s case later metastasised to his lungs.

After being told by doctors that the lung cancer would eventually kill him, Kouijzer “immediately began an ongoing process of researching every possible thing that I could do (conventional and integrative) to change the course of history I found myself on,” he explains, “discussing different treatments, arranging tests, ordering supplements, radically changing diet, speaking to therapists, embracing meditation and breathwork, taking in as much information as we could and trying to make sense of it all.”

MPNST is non-chemosensitive, meaning it doesn’t respond to chemotherapy. Doctors in the UK’s National Health Service (NHS) suggested operating on one lung at a time to remove as much of the cancer as they can, and then follow up with chemotherapy to “manage the disease”, Kouijzer continues.

“We are embracing surgery with open arms, and feel fortunate to have an amazing surgeon within the NHS, but bog-standard chemo that isn’t likely to work just doesn’t feel good enough for a long term outcome.”

“We are more hopeful than that,” he adds, explaining that “there are other forms of treatment, targeted therapies and immunotherapies that can in some cases have better outcomes that we want to explore after surgery. Eligibility for these depends on certain genetic mutations which need to be tested for using expensive molecular testing and DNA sequencing – something that is not available as standard through the NHS. If I have certain genetic mutations, I might be eligible for some of these more promising treatments, and maybe even beat this thing!

“If I have certain genetic mutations, I might be eligible for some of these more promising treatments, and maybe even beat this thing”

“While I’m not turning my back on the NHS, who have been in so many ways amazing up until this point, we need to form the right team of people, do the necessary testing and create an individualised treatment plan for me, no matter what or where in the world this takes place.

“I just don’t have the financial resources to do all of this alone.”

Kouijzer, who is currently in hospital recovering from the first of the lung surgeries, says he has been “blown away” by the support for the fundraiser – which includes donations from friends, wellwishers and colleagues in the concert business – which smashed through its £50,000 target within a matter of hours on Friday 8 April.

At press time, the GoFundMe stood at over £117,000 – every penny of which will be put towards “treatments further down the road”, says Kouijzer, whose CAA roster includes electronic music acts 808 State, Meduza, Tough Love and Bearcubs.

“Thank you so much, everybody – I can’t tell you how this makes me feel,” he adds. “It’s been a lonely week in hospital but the support I’m feeling today is just unreal.”

To donate to Kouijzer’s campaign, visit Ben Kouijzer’s fight to survive MPNST on GoFundMe.

 


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