Finding a solution to one of Australia’s most hidden diseases

Megan Donnell is the CEO and founder of the Childhood Dementia Initiative, a charity fighting to support the thousands of kids in Australia who suffer from this mostly-unknown disease. She’s this week’s Changemaker. 

When Megan Donnell’s two children were diagnosed with a form of childhood dementia, Sanfilippo Syndrome, she was told it was unlikely they would see their 18th birthdays. 

With no treatment available and a poor global understanding of what the disease is, Donnell got to work, setting up the Sanfilippo Children’s Foundation in 2013.

But as she dug into the issue, she realised that with so many disorders and syndromes sitting under the umbrella of childhood dementia, her efforts would be far more effective if she created one organisation that encouraged global research, collaborations and accelerated action on childhood dementia.  

Globally, there are an estimated 700,000 children and young people living with childhood dementia, and each year 48,300 kids and young people die from the disease. 

The average life expectancy for children with dementia is just 28. Sadly, approximately 75 per cent of children with a form of the disease have a life expectancy of under 18. 

It’s why in 2020, she created a new charity, the Childhood Dementia Initiative, a charity connecting the dots between the individual syndromes and accelerating research in the area. 

She has received a number of awards for her work, including Research Australia’s 2017 Advocate of the Year Award and being named a 2021 Pro Bono Australia Impact 25 Award winner.

In this week’s Changemaker, Donnell discusses her path to leadership, the power of working for a personal cause, and why making smaller changes is better than none. 

What led you to getting involved in the social sector? 

Almost nine years ago, when they were aged just two and four, both of my children were diagnosed with Sanfilippo Syndrome, a form of childhood dementia. I was told they were unlikely to see their 18th birthdays and that their decline would mean a terrible quality of life for the entire family unit. I don’t have the words to articulate just how devastating this was. There was no treatment available to them and a dismal level of research underway anywhere in the world. 

I realised the only tragedy bigger than losing my kids to Sanfilippo would be if their lives had been lived in vain. There is a beautiful quote from Melinda Gates, “people in grief will fight for a cure”, and so that’s what I did. I established the Sanfilippo Children’s Foundation in 2013 to drive research. I am very proud of the achievements of the foundation which have helped transform the research response for Sanfilippo both here and internationally. This work continues today, and I am still on the board.  

You then created the Childhood Dementia Initiative in 2020. How did that come about? 

When I first started the Sanfilippo Foundation, I knew my corporate background as a management consultant was different to others working in the space, but I quickly realised that wasn’t necessarily a bad thing. For the first time in my career I was in a unique position where no one expected me to have the answers – stupid questions were my super power! If something didn’t make sense, I would query it until I understood. While this strategy mostly worked in the eight years I was running the foundation, I couldn’t help but notice [there were] a range of systemic problems that no matter how many questions I asked just didn’t make sense. 

In the research space, I saw fragmentation, duplication and inefficiency, and so many lost opportunities to collaborate. There were some brilliant researchers focused on specific childhood dementia disorders but they are severely underfunded and when they are funded it is to focus on a single disorder at time.

And as a mum, I watched families just like mine inadequately supported, struggling to navigate complex health systems that don’t accommodate children with dementia and families who have to fight for every scrap of funding and assistance. I knew there had to be a better way. I commissioned a burden of disease study to look at the collective group of disorders that present with childhood dementia. 

The results were both horrifying and compelling and the Childhood Dementia Initiative was established to address the hidden problem of childhood dementia.  

What were some of the challenges in setting up a charity? 

As this is the second charity I have set up, I was in quite a unique position that I had learnt from the experience of the first one and was able to do things differently this time. 

We have been able to scale quicker and establish critical rigour early, for example we have had an impact measurement framework [in place] from our first year enabling us to clearly articulate the tangible difference we are making to children with dementia.

Having said that, this is the first time I have started a charity in the middle of a global pandemic, so there are some unfamiliar challenges for sure! Unsurprisingly our biggest challenge in starting up has been funding, in particular capacity funding. The Childhood Dementia Initiative is getting broad support from stakeholders across the board which is a great endorsement that we are onto something with the collective approach, but as anyone working in the sector understands, in order for an organisation to optimise strategic outcomes we need to invest in organisational capacity as well as programs. 

We are fortunate to have a few forward-thinking philanthropists who recognise this. However, the need for change in how we as a society support children with dementia and their families is so acute, we are constantly striving for funding to make the most of this time when people are energised and interested in realising change, and to achieve financial sustainability. 

The other key challenge we have is lack of awareness. The most common response I get when I say the words “childhood dementia” to anyone is disbelief.  Right now, thousands of Australian children are suffering and dying slowly with dementia, without access to the care or therapies they need and shockingly most people have never heard of it. So, if the problem is so vast, why hasn’t it been addressed already? The simple answer is that until now the childhood dementia disorders have all been researched and cared for singularly, in silos.  Individually each of these rare conditions are statistically insignificant which means awareness is low and there is very limited incentive or funding invested into solutions. However there is so much commonality across these conditions and the people experiencing them. There is power in numbers and at the Childhood Dementia Initiative we are changing the narrative to drive world-first action on childhood dementia. This principle of collective consideration is relatively simple and we have seen the concept work successfully for other groups of disorders including cancer and ageing dementia.

This is quite a personal cause for you, how do you balance between leading the organisation and managing personal pressures? 

It is true that if it weren’t for my kids and their diagnosis I would not be here today and the Childhood Dementia Initiative would not exist as it does. But I think about them as the catalyst for this work, not the primary beneficiaries. In fact, given the stage of disease my kids are now at, it is unlikely that they will see significant benefit in their lifetime – the work we are doing at the Childhood Dementia Initiative is much bigger than my kids. 

There are an estimated 700,000 children and young people living with dementia today and we have a huge opportunity to make a difference for them and their families.

The fact that I have lived experience means that I understand the urgency of our work and the challenges, both visible and unseen, that families face when a child they love has dementia. I also appreciate the importance of bringing the family voice through everything we do from setting research priorities, to influencing health and social care services, to advocating for systemic change. 

What are some of the things that inspire your leadership? 

I am inspired every day by the children who suffer from dementia and the families who love them. Quality of life for the entire family unit is extremely compromised but there is so much more we can do to improve that. I am also mindful of the families who do not yet know that childhood dementia is in their future. I am striving to ensure that when they receive this terrible diagnosis, they have a completely different experience than the one most families have today. I hope that through the work we are doing now these future families have access to appropriate care and therapies and perhaps one day, even a cure.

I am also inspired by my team, board and expert advisors at the Childhood Dementia Initiative who bring not only expertise from across the paediatric health, science, and not-for-profit sector but also endless passion and energy for our cause.

How has running the Childhood Dementia Initiative changed your perspective of the world? 

I have discovered that big sweeping transformation isn’t always necessary, sometimes relatively small changes or tweaks to existing services, infrastructure and even language, can have a profound change. That is a core principle of our work; advocating for the adaptation of established systems to accommodate the needs of our community and change the way we think about dementia in children.