Bronya Metherall: Living here, you have an unspoken affinity with people
Cerebral Palsy (CP) is one of the most chronically overlooked conditions in the world, and it’s New York-based Bronya Metherall’s mission to change exactly that.
Bronya is the Executive Director for Cerebral Palsy Alliance Research Foundation (“CPARF”), the US friends of organization to Cerebral Palsy Alliance in Australia and the world’s largest private funder for cerebral palsy (“CP”). Bronya relocated to New York from Sydney in 2015.
Catching up with Bronya in New York over a coffee; her passion to accelerate breakthroughs for cerebral palsy of CP is palpable. Bronya explained the importance of her organization’s role, professional highlights from her time in NYC, and their exciting upcoming initiatives.
Interview by Molly O'Brien
What is Cerebral Palsy?
Cerebral Palsy is a physical disability that affects movement and posture. It is a permanent life-long condition that results from an injury to the developing brain. Cerebral means ‘of the brain’ and palsy refers to ‘a lack of muscle control’. Because of the work our organization has done for the last decade, we now know that most cases of CP happen during pregnancy. Australia is leading the charge with Cerebral Palsy research globally; we’re known as the world expert and have brought the rate of CP down significantly in Australia (from 1 in 400 to 1 in 600 babies recently).
What are the effects?
The parts of the body affected by cerebral palsy and the level of severity and combination of symptoms can differ for each person. Cerebral palsy affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. 1 in 3 people with CP cannot walk, 1 in 5 cannot talk. Over 80% of individuals with CP experience chronic pain on a daily basis.
How is it caused?
Researchers have determined that only a very small percentage of cases of cerebral palsy are due to complications at birth (e.g. asphyxia or lack of oxygen). Although premature birth is the largest risk factor for cerebral palsy, it is usually the sequence of events that led to the premature birth that may have caused the cerebral palsy, rather than the birth itself. In 13 out of 14 cases of cerebral palsy in Australia, the brain injury leading to cerebral palsy occurs either in the uterus (while the mother is pregnant) or before 1 month of age.
When do you know that a baby has CP?
This can be complicated. Very often a parent notices the child is not meeting certain milestones, such as walking or talking. We know that identifying CP as early as possible is crucial in order to reduce the impact of the condition through early intervention and therapy.
To this end, we have rolled out an early-detection program across Australia called the ‘General Movements Assessment’, where a clinician is trained to observe a baby’s movements, allowing for a diagnosis as early as three months. This is one of the initiatives we’re rolling out in the US. We have trained top clinicians from NYU and Columbia Medical Institutions and hope to expand this training to other institutions across the USA soon.
What is the future of CP research?
Historically, CP has been perceived as unpreventable; research collaboration and shared findings were incredibly rare and investigation into prevention and cure was limited.
The last decade has seen an exponential leap in our understanding of cerebral palsy, a shift that CPARF is proud to have been instrumental in leading. Finding a cure was once deemed impossible; it is now firmly on our agenda. Fast-paced progress continues, and CP is now considered one of the most exciting areas of medical research, holding enormous promise to revolutionize our understanding of the human brain.
Breakthroughs are being made at rapid pace in some key areas of promise; stem cells have the potential to repair and regenerate an infant’s brain injury, genetics have been proven to play a bigger role than initially imagined, and the overlap between premature birth and CP provide an promising roadmap for early intervention in babies born at “high risk”. Technology innovations in robotics, exoskeletons and thought-to-speech devices give us enormous hope for the future.
We are really excited to work with the smartest minds on a really cutting-edge research agenda.
What is your background?
I was trained as a lawyer but it was never my passion as a commercial career; I saw it as a great way to discipline the mind. It really tightened up my framework of critical thinking and problem-solving. My anthropology major really nurtured my interest in basic human rights and the study of cultures and I commenced my career early in the international aid sector with The Fred Hollows Foundation, both an outstanding life experience and organization. During my time there, I worked on a variety of low-cost health innovations and Indigenous health access projects.
I was offered a fundraising role at the Cerebral Palsy Alliance, which was my foray into the disability sector, providing me a new skillset in unchartered territory. I had been in that role for just over a year when there was a strategic decision by the organization’s Board to expand its mission to the US. There was a huge unmet need for capital-raising for CP research and given our organization’s international reputation for leadership, we were invited to expand in the US by a group of influential CP parents.
It happened in the space of a couple of months – discussions commenced in April and by October, I was packing my bags. I dragged my ever-support husband with me and we became newly-married, New York residents in late 2015.
What fundraising initiatives do you have?
“Steptember” (www.steptember.us) is our main fundraising initiative for CP. It’s a 10,000 step-a-day challenge for 28 days straight from 3 Sept-4 Oct. We designed it as a corporate health and wellness platform that companies can offer to their staff to stay healthy and boost team morale. It’s proving to be really popular in US, and now we’re approaching hundreds of companies here to choose Steptember as their company-wide employee engagement initiative.
We run this in 7 countries around the world and have raised over $20M for CP since 2010. There is huge potential to do much more.
What has been a professional highlight during your time here?
We recently hosted an international Technology and Innovation Summit in San Francisco. The aim of the summit was to build and execute carefully-designed roadmaps to bring new accessible technologies to market that challenge previous barriers, leverage new advances in computer science and universal design. This was our 7th international summit on a critical topic for CP. It was so inspiring to see over 70 of the world’s leading experts in neuroscience and engineering, including leaders from Microsoft, Facebook and Google, coming together to agree on an accessible technology action plan for the future.
It is moments like these I know we are on the right path.
How is your current mission informing your end goal?
Our current mission is fundraising to accelerate the research for eventual cure, prevention and treatment. There’s really no other organization focused on that.
Although CP is the most common physical disability in childhood, it is drastically underfunded, receiving a small fraction of medical research dollars and yet affects so many millions of individuals, their families and costs governments billions of dollars each year.
By partnering with the leading institutions in the world and committing to raising the funds urgently needed, CPARF is driving immediate action on these priorities. We need tens of millions of dollars to carry out cutting-edge science for CP and we also need the best minds around the table to lead it. This is precisely why we believe breakthroughs rest on collaborations; the cure for CP will likely be discovered by multi-disciplinary teams working together, not someone working in isolation.
Was it ever in your plans to spend time overseas?
I have lived and worked in London, Denmark, Thailand and remote Western Australia but I had never been to the US, let alone New York.
I remember going to Times Square for my first meeting, and being completely blown away by the sheer energy and rush of the place. Since then, it’s been an incredible ride of my life and a steep learning trajectory.
New York helps you grow thicker skin, patience and an open mind. It has absolutely expanded my resilience and served as a sharp reminder that anything is possible.
What was it like having a baby in New York?
It was an amazing, unique and totally character-building experience. Being pregnant in New York can be difficult, though – morning sickness on the subway is quite an experience! There is also nothing more “New York” than taking an Uber home from the hospital with my newborn. My daughter is an American citizen by birth and this remain a special place for our family history. Becoming a new mum (or “mom” rather) has really informed my New York experience. The juggle that career-women manage in this city is something to admire. I think New York women are incredibly resilient.
How would you describe your New York experience?
New York will always be my second home. Living here, you grow an unspoken affinity with your fellow New Yorkers and a shared understanding of the rollercoaster it can be. I feel a commonality with New Yorkers that I have felt in few other places; I love how impatient for progress, passionate and embracing they are. It is a mixing pot, culturally, artistically, creatively; a giant [at times, smelly] soup of some of the world’s best talent, all crunched up against one another almost every day of the week. You can do almost whatever you wish with that level of energy.
I now say that from this city you will get back what you give. The single most important lesson for me has been that you cannot be closed minded.
I have also learnt that you can never go wrong with a pair of flat shoes stashed in your handbag.