10 questions with Ovarian Cancer Action’s founder Allyson Kaye

02 June 2016
Allyson Kaye

This year sees Ovarian Cancer Action celebrating 10 years of pioneering scientific research. Founder and Chair, Allyson Kaye, reveals why she set up the Ovarian Cancer Action Research Centre, the vital part that the charity's supporters have played, and her hopes for #TheNext10...

What inspired you to set up the Ovarian Cancer Action Research Centre?

After my mother died of ovarian cancer, I was fortunate enough to meet leading scientists around the world, and to visit successful ovarian cancer research centres in the USA. I decided that we needed to set up an ovarian cancer research centre in the UK that supported women and provided continuing research, not just isolated 3-year scientific projects.

How is the work carried out at the Ovarian Cancer Action Research Centre helping to improve the prognosis for women diagnosed with ovarian cancer?

We always put a woman first. There is plenty of clever science but our work has to improve rates or length of survival, prevent more cases, and improve the quality of life of those suffering from the disease.

Our work is peer reviewed which means that it is checked by top independent scientists to ensure it’s of the highest standard.

You’ve always encouraged collaboration amongst scientists from around the world. Why is this so important?

Cancer is a complex disease, we are all as different on the inside as we are on the outside. There are resources from around the world that we must share, as ovarian cancer is a disease affected by many genes, not just one.

It is also not a common enough disease for all labs to have enough good material or enough manpower to research the many variations. Knowing what hasn’t worked, as well as what works, is vital. The evidence and experience of the worldwide community can therefore accelerate research.

How has awareness of ovarian cancer changed over the last 10 years?

Ten years ago ovarian cancer was barely talked about or presented in the media. Awareness of the disease today is far greater, although many people still don’t know the symptoms or the difference between ovarian and cervical cancer. I still find myself saying, “No, a smear test will not detect ovarian cancer!”

What is the most satisfying part of your role as Chair of OCA?

It is mentally stimulating. I meet fantastic people and enjoy working with my colleagues.

What has been your biggest challenge?

Timekeeping!

What achievement are you most proud of in the last 10 years?

I still feel surprised that I managed to set up the Ovarian Cancer Action Research Centre in 2006 and negotiate a ‘deal’ with Imperial College when we had nothing to give.

Since then we have invested approximately £7.5m in the centre and, with other funds, the 10-year total investment has exceeded £20m. We have 55 researchers, we curate an international think tank and have recently published two Nature Reviews cancer papers with the priorities for ovarian cancer research worldwide. We also fund other researchers and research databases around the country – it’s still hard to believe so much has been accomplished in a decade!

How have OCA’s supporters helped to help create change?

One voice is not enough to make a change. You must communicate widely to drive a cause and I am so grateful to our thousands of generous supporters, funders, more than 30,000 Facebook and Twitter supporters, our media voices and all the families that continue to fight on behalf of women with ovarian cancer.

What would you like to see OCA and the research centre achieve in the next 10 years?

Today we know we can prevent at least 17% of cancer in the next generation, so I would like to see a big reduction in mortality. We can develop technology and devices so patients won’t need to go to hospital as frequently and will be able to live a life as close to normal as possible – I’d like to see researchers make this become a reality.

How can our supporters help us achieve this?

This is your charity. Speak up. Join in. Donate. Tell your story.