Why we do it: CCLG Research Strategy Day

Don’t Look Down has raised over £100,000 for leukaemia research through our fundraising efforts.  However, we also think it’s important to actively participate in how that money is spent.

I was recently invited to speak at CCLG’s new research strategy workshop, by Sarah Evans, CCLG Research Manager.. This was a day for CCLG to discuss with researchers, clinicians, and parents to lay out their priorities for its time, attention and funding in the years to come.

I spoke about Fred, his life before diagnosis, and what happened to him throughout his treatment. I always jump at any chance to talk about Fred and how he lived, but it was an emotional presentation. I realised that I love talking about Fred so much that I don’t have to think about his treatment and what he went through.  Four years on, I still find it incredibly hard to say the words “he died” out loud.

However, it felt important to explain his story to people who had an in-depth knowledge of what all of those words mean.

I explained why we set up Don’t Look Down and what we hope to achieve.

  1. To give us all an excuse to talk about him and show his face
  2. To celebrate the adventurous way that he lived, not how he died.
  3. To find kinder and more effective cures and treatments.

In terms of number 3, Fred had a very aggressive form of leukaemia that didn’t respond well to chemotherapy. No one really knows why his cancer behaved in that way or what could have been done differently. After months of chemotherapy, he eventually received new immunotherapy treatments and Car T Cell therapy, which weren’t successful either.

We want to fund research into treatments that would have saved him. However, we also hope that there is a way to identify, right at the beginning of a diagnosis, that the particular features of this leukaemia mean that the standard pathway isn’t going to work and embark on another plan right from the start of a ladder to bypass a lot of the chemotherapy snakes. Tailored, kinder treatment is what all researchers are working towards, and it is important to us that Fred is a part of that.

Rachel spoke about her son Sebby, who was also diagnosed with leukaemia but, after three years of treatment, is now a thriving 9-year-old. Rachel is a member of the parent panel and talked about her work.  Sharon, from the Special Named Fund Samuel’s Promise, was also there to share her experience.

Sarah and Ashley from the CCLG team, and some of the researchers spoke of some of the challenges they face, the opportunities and where they would like the strategy to go.

The rest of the day was spent working in groups, discussing the priorities that should lead the strategy and practical ways they can be implemented.

I never made it past GCSE balanced science, so I always feel a little out of my depth in these things, but I am grateful that CCLG works so hard to ensure that parents have a voice in this. It was also great to see a discussion about how children and young people, both during treatment and after, can also have their say.

It was good to meet the researchers working so hard with the funds we raised and share our first-hand experience. I spoke about how Fred didn’t have severe side effects from his initial treatment and, like not having morning sickness, worried at the time that this meant it wasn’t working. I worried that the fact that he was so hardy and had such a high pain threshold meant his early symptoms were missed. It felt good to have these heard as interesting research areas to consider rather than the ramblings of an anxious mother.

The professionals will now go away and combine our thoughts and ideas into a coherent strategy, which I will share when it’s ready.  However, in the meantime, I feel honoured that Fred can play a role in that.

We have three research projects that we are helping fund at the moment.  They all work precisely on the areas we hoped when we set up the fund.

It means so much to us that Fred’s legacy will help other children and families in the future. We are incredibly grateful to all of you for your hard work and support. None of this would happen without you.

As Fred’s 18th birthday approaches, we have plenty of activities for you to get involved in, so look at what we have planned.