Proud to support these three vital research projects

Don’t Look Down is proud to support three important research projects, which are now underway.  All are designed to further understand blood cancer, how it develops and behaves and ultimately how it can be treated.

Every penny of the £100,000 you have raised so far will be spent on these projects.  Thank you so much for all your donations, fundraisers and support that you have so generously given.

When we founded Don’t Look Down, we aimed to raise funds to support research into better ways to diagnose, treat and cure childhood leukaemia. Having no experience of scientific research, it was difficult to see in the beginning, what form that would take. It was important to us as an idea, but we didn’t know what that looked like, or how long it would take to have something meaningful to focus on.

We are thrilled that Children’s Cancer & Leukaemia Group have pooled our funds with other Special Named Funds so that three new research projects can be funded.  Not only does it mean that these can go ahead sooner, but also it gives us the opportunity to work alongside the other CCLG families who have become our friends.

In particular, it is lovely to see Fred’s name alongside Ruby’s Live Kindly Live Loudly fund.  Although they never met, they were diagnosed at the same time, and died within days of each other in May 2020. We are now close friends, and often get together and talk about our beautiful children.

We wanted to fund research into treatments that would have saved Fred.  However, we also wanted to know if there was any way his medical team could have known sooner that his leukaemia was a difficult kind to treat, and whether that could have led to different treatment options at an earlier stage. Tailored, kinder treatment is what every researcher wants, and we wanted Fred to be a part of that.

The three projects are

Understanding molecular mechanisms that drive high-risk childhood acute lymphoblastic leukaemia (ALL) at Oxford University, led by Professor Roy 

This project aims to find out how certain genes make acute lymphoblastic leukaemia resist treatment or come back after treatment (relapse). It is often difficult to cure patients once they have relapsed (as was the case for Ruby & Fred), so a better understanding is needed of the mechanisms that make these leukaemias high-risk in order to develop effective treatments. Professor Roy has found genes that leukaemia cells need to survive. In this project, her team will look at how the cancer cells behave with and without these genes. This will show exactly how the genes allow the leukaemia to relapse and resist treatment. The hope is that this research will eventually lead to a meaningful improvement in survival and quality of life for children with high-risk leukaemia.

Long-term outcome and risk factors among children and adolescents with acute lymphoblastic leukaemia high-risk genetics at Newcastle University, led by Professor Moorman 

This research aims to help doctors decide which patients need stronger treatments and which could safely have less treatment. In the past, young patients with high-risk leukaemia have been treated with high-dose chemotherapy and sometimes transplants. This improved outcomes for many of these patients, but the strong treatment can have very serious long-term side effects. Better understanding of the factors that put a young person at risk of relapse will enable doctors can decide the best treatment for each child. Professor Moorman’s team will be looking at a patient data from the past 30 years to find out whether factors such as a patient’s age at diagnosis or their treatment type, could be used by doctors to predict the severity of a patient’s leukaemia or likelihood that it will relapse.

Read more details here

Identifying a new blood cancer to improve the outlook for patients with acute lymphoblastic leukaemia at University of Glasgow, led by Dr Gillian Horne

This research aims to understand more about a particular type of leukaemia – Philadelphia positive acute lymphoblastic leukaemia (Ph+ALL) – which can be very hard-to-treat. Some patients with Ph+ALL don’t respond well to treatment, and doctors think this could be because their cancer is more similar to another type of leukaemia, called chronic myeloid leukaemia. This cancer needs more intensive treatment than Ph+ALL, which could explain why these patients don’t respond as well to Ph+ALL treatments. Understanding which patients are unlikely to respond to standard treatment, means that more intensive treatment approaches can be used from the outset, increasing the chances of a successful outcome.

Read more details here


    The other Special Named Funds supporting these three projects are:

    We will keep you posted on each project as it develops. We are privileged to work  alongside these wonderful professionals and families.