Farewell Janet Nash

Published: September 2019

After 15 years of working tirelessly to promote research into motor neurone disease (MND), Janet Nash has retired from the Motor Neurone Disease Research Institute of Australia (MNDRIA) – the research arm of MND Australia.

Janet leaves hopeful that a new era of collaboration in MND research in Australia and across the world continues to play a vital role in the search to find an effective treatment for MND.

During her time at MNDRIA, Janet saw how the amalgamation of MNDRIA with MND Australia helped to provide stability and the wonderful craziness of the Ice Bucket Challenge, which brought widespread awareness of the need for change.

During her time at MNDRIA, Janet saw how the amalgamation of MNDRIA with MND Australia helped to provide stability and the wonderful craziness of the Ice Bucket Challenge, which brought widespread awareness of the need for change.

We had a chat with Janet about the growth and changes at MNDRIA during those years and how her background in neuroscience research and a passion for a better future for people with MND helped sustain her focus.

When did you start working with motor neurone disease?

I was first introduced to MND in the early 90’s when I worked with Garth Nicholson and his research team at the molecular genetics lab at The University of Sydney.

This was an exciting time in MND research with the discovery of the first faulty MND gene in 1993 and then, in 1994, riluzole was shown to be effective in prolonging life in people with MND. With the discovery of not only a cause but also an effective treatment, it seemed that research was well on its way to finding all the answers. 

I chose to leave research when MND NSW needed someone to take on the role of establishing their care support service. This allowed me to give something back to the people who had so willingly participated in the research. I could now help to provide practical support and information to people diagnosed with MND and their families.

Why did you take the role with the MND Research Institute of Australia (MNDRIA) as its Executive Officer?

MNDRIA had been conceived as a national organisation in 1984 to promote and provide funds for MND research in Australia. It was largely run by volunteers with some admin help from MND NSW and MND Victoria.

Twenty years later it was clear that permanent help was needed to manage day to day operations. I was not looking for a change but when invited by David Lamperd, the honorary secretary and treasurer of MNDRIA, to take on the executive role at MNDRIA it seemed like the logical next step for me to take.

In my 10 years at MND NSW I had set up the beginnings of the family support service, then the equipment and information services, but I had always maintained an active interest and involvement with MND research and its funding.

I had come from working in research in the lab, to supporting people with MND through provision of care and information, so supporting research completed the circle.

What were some of the most significant things achieved by MNDRIA while you were there?

More funds have led to bigger grants which have attracted better research projects and accelerated research discoveries. The $1million target was reached in 2009. And $4 million in 2018.

With more funds available, the Research Committee was able to introduce a broader range of grants to include people at all stages of their research career. MNDRIA now plays a significant role in supporting the MND research workforce in Australia.

As grants became larger, collaborative proposals with researchers in other institutions were encouraged. Collaboration is now the norm – researchers are sharing their expertise and minimising duplication.

What helped MNDRIA with these achievements?

• Nothing would have been possible without money.
• The state MND Associations have always provided the backbone of financial support, passing on donations for research received from their supporters.
• The introduction of named grants encouraged sponsors to contribute large donations annually.
• The MND Ice Bucket Challenge in 2014 was a major turning point with a massive acceleration of awareness and funding which has continued.
• Expansion of membership of the MNDRIA Research Committee under the chairmanship of Prof Dominic Rowe for 10 years then Prof Matthew Kiernan for 5 years.
• Amalgamation of MNDRIA with MND Australia brought governance and accountability to a Board of Directors and support from MND Australia’s CEO, Carol Birks. My title was subsequently elevated to Executive Director, Research and Carol and I were no longer working alone but as a members of a small team.

What was most challenging?

MNDRIA was always run on a shoestring with no government funding and every dollar of every donation spent only on research. This meant paid hours were a minimum and additional staff was not possible. The most challenging thing for me, therefore, was time. 

How did you overcome those challenges?

I could not have managed without the enormous support provided by volunteers, particularly Paula Trigg who served as honorary secretary of MNDRIA from January 2005 until amalgamation of MNDRIA with MND Australia in 2010.

Together with MNDRIA Chairman Dominic Rowe and Treasurer Bob Howe and many other volunteers, we laid the foundations to surge ahead. My days often extended far into the night.

What was most enjoyable?

• The last Friday in August is the closing date for research applications for the annual funding round. It's always exciting to see who is applying, where they were from and the focus of their research.
• The annual grants allocation meeting when the Research Committee make decisions and grant awards are announced.
• The MND Ice Bucket Challenge in 2014 changed everything. This was like living in a dream with money pouring out of the sky and awareness of the urgent need for funds for research and care sweeping around the world.

What are the most significant things you’ve learned during your time?

Without awareness there is no funding. Without funding there is no research. Without research there is no effective treatment. Without effective treatment, there is no hope.

We all need to work together to make sure we can provide that hope.

What do you think you’ll miss the most?

The people, in particular:

• The many people I have known who died from MND but whose memory lives on
• The volunteers whose friendship and support will always be valued
• The countless amazing donors, many of whom I have come to know well through chatting on the phone, participating in their fundraising events, or accompanying on lab visits to show them how their contributions are being used
• The dedicated researchers who are so dependent on the grants they receive
• The small team at MND Australia whose combined skills achieve so much

In five years’ time, what do you hope MNDRIA will have achieved?

We all hope for an effective treatment for MND.

I would also hope that the various MND research promotion groups in Australia have found a way to work together. They all have a common goal so pooled objectives and resources must provide greater stability and a greater chance of achieving that goal.

What have you got planned now?

No changes, really. Except that I’m giving up the 2am emails and I look forward to spending meaningful time with my family and my friends.

I have always had a very full life with a love of opera, classical music and the arts. With fewer commitments I will have a much greater chance of staying awake during performances!