Families fund research that will improve treatment for rare leukaemia variant

  • Published:

Children’s Cancer and Leukaemia Group (CCLG) is proud to announce a new research project which aims to improve treatment for children with a rare variant of leukaemia.

Dr Gillian Horne, of the University of Glasgow, is leading this important new research that aims to understand more about a variant of 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 (CML). This cancer needs very different treatments to Ph+ALL, which could explain why these patients don’t respond as well to Ph+ALL treatments.

Dr Horne said:

We want to understand more about patients with this new variant of Philadelphia positive acute lymphoblastic leukaemia, called ‘CML-like Ph+ALL’.

This is hugely important because, if we find that there are patients in this group that don’t do as well with standard treatment, we can make sure to use more intensive treatment approaches from the start.

This project has been funded by CCLG Special Named Funds Ayla's Fundraising Adventure, Kayla's Rainbow Appeal, Ethan's Journey of Smiles, Ruby's Live Kindly Live Loudly Fund, Fred Bennett's Don't Look Down Fund and The Toti Worboys Fund.  

Ayla’s parents, Sara and Andy, set up Ayla’s Fundraising Adventure while she was undergoing treatment for Ph+ALL in 2021, with a mission was to raise enough money to help fund research into this cancer.

 

Sara said:

When Ayla was first diagnosed, and we were trying to find out more about her rare type of leukaemia, it was very scary. 

We learnt that it was one of the rarest subtypes of leukaemia and also, one of the most aggressive. Only around 3% of patients with acute lymphoblastic leukaemia are Philadelphia positive like Ayla is.

We are all absolutely over the moon to be a part of something so incredibly life changing. To fund research that will help patients at the point of diagnosis, which is the hardest and most overwhelming time, is truly something special to us. 

Ethan’s family set up Ethan’s Journey of Smiles, while he underwent treatment for Ph+ALL.

 

Claire, Ethan’s mum, said: 

To hear that we have now raised enough money to fund vital leukaemia research is fantastic news.

We can't thank our supporters enough for their kindness in helping make this happen. We hope to continue fundraising for more vital research projects, and to help raise awareness of childhood cancer, which I didn't realise was a problem until it affected our family.

Dr Horne’s team will look at cancer samples from patients with Ph+ALL that behaves like chronic myeloid leukaemia to find out how it develops, and whether there is a way to diagnose it sooner. This would mean they could start stronger treatments sooner, giving them a better chance of killing the cancer.

She said:

There is still so much to know about this variant of leukaemia and our project will take us one step closer to uncovering the intricacies of this disease.

Our ultimate aim is to improve patient outcomes, particularly for children that don’t respond as well to current standard treatment approaches.

We are so excited to get started and are truly grateful for all the funds’ support, which allows us to continue this important work.

Ten-year-old Kayla, whose fund ‘Kayla’s Rainbow Appeal’ has helped to fund this project, was delighted to be part of changing the future for other children with Ph+ALL.

 

Her mum, Siana, said:

When we told her that we were funding a research project, Kayla was over the moon! The pride on her face was a beautiful sight. She couldn’t wait to phone her family and friends to tell them.

We owe a lot to our local community, who have outdone themselves time and time again. They not only support us financially but also by letting us use venues and equipment whenever we need. We couldn’t have done this without them.

Sarah Evans, CCLG Research Manager, said:

Dr Horne’s project is a great step forward for children with rare types of leukaemia. One of our missions at CCLG is to make sure that every type of cancer, no matter how rare, is researched to help create a brighter future for these patients.

We can’t do this without our amazing Special Named Fund families, and we are so grateful for all their incredible fundraising.

Find out more about the project