Dominik Byrne: Leading a charity born out of griefe

Dominik Byrne is chief executive of childhood cancer care charity Azaylia foundation, which was created by the parents of Azaylia Diamond Cain, who died at just eight months old from acute myeloid leukaemia.
____________________________________________________________________

My role as chief executive of the Azaylia Foundation is one that comes with a unique set of challenges, responsibilities and rewards.

The Azaylia Foundation is proud to donate to UK institutions that advance early diagnosis and improve the availability of new treatments, as childhood cancer receives less than 3% of cancer research funding.

We work to help destigmatise childhood cancer as ‘rare’- a classification that means funding for childhood cancer is not prioritised, leading to real, devastating consequences for the children and their families affected.

Additionally, we work to also provide individual children suffering with cancer access to treatments that aren’t available to them on the NHS.

My job is to reduce the barriers between diagnosis and treatment for children, and turn grief and loss into positive solutions for families now and in the future.

The charity itself, however, has such a personal relationship with the subject, as it was founded by Ashley Cain and Safiyya Vorajee after they tragically lost their 8-month old daughter, Azaylia Diamond Cain, to AML (acute myeloid leukaemia).

Azaylia’s nickname was ‘little lion,’ and her bravery during her fight with cancer gave her parents the power to create a charity to help as many children as possible.

It is, of course, complex work to manage a charity as both a business, and an organisation borne out of grief.

I entered the team at year four when the organisation was at a crossroads, as some of the raw, initial grief had settled, this allowed me to focus on the strategic elements of running a charity, to get us closer to our shared goal of creating positivity and helping families nationwide in their fight against cancer.

As a newly appointed leader, there was a balance to find between being sympathetic to the wishes of the family, whilst also concentrating on delivering support families needed and focusing on future-proofing the organisation.

Working in an organisation of this nature means prioritising being present and valuing the quality of work you do with each individual child and with institutions on a day-to-day basis, whilst managing it requires you to be strategic and looking ahead.

Empathy

The combination of empathy and passion is crucial to achieving the continued success of the organisation.

In terms of communications and marketing, there is a fine line between using Azaylia’s story to generate sympathy for the charity while trying to showcase the ongoing and new work of the charity and represent the families we support.

Whilst our link to the Cain family means an understanding and empathy that families who come to us can appreciate, it is important to showcase the fantastic work offered to other families as under The Azaylia Foundation name.

We manage to strike this balance correctly in the different styles of content we put together, mixing Azaylia’s story with content of the impactful work the foundation does in order to show how we respect the charity’s roots and keep them close to the heart of our operations, whilst looking forward to helping as many others as we can.

This principle holds across all of our communications, including any fundraising stories we put out.

A similar challenge arises in balancing our desire of keeping Azaylia’s legacy alive while championing families and the research that goes beyond her story.

Working closely with the family means relying on the strength of the founders in their desire to create positive change and support other families, whilst working on our internal strategies to create a governance and operational structure to deliver for the future, and not allowing one strain of work to occlude the other.

As CEO, I have to stay aware that the emotive heart of the organisation has to exist alongside the more strategic decision making of my role, and so my leadership itself has changed to react to this duality.

Leadership development

My leadership has developed while being in a charity where grief is a big part of what we do and see. I am now softer in my approach when explaining decisions and thought processes, while still being strong in decision making in order to steer the charity forward. Key to this is being sympathetic and understanding why the family believes strongly in particular notions, and honouring their desires while maintaining professional operations and prioritising the delivery of the charity’s goals.

A major part of my leadership development has been in learning and educating myself on what this particular charity has needed to grow.

With subject matter this personal, alongside a goal this impactful to a wide range of families, it is my role as a leader to intervene at every stage between the roots of the charity and its output.

This way, I ensure empathetic leadership that delivers interpersonality alongside key deliverables so I can maintain and improve upon the charity’s existing successes.

---