Personal Challenge Leads to Brainwave

Once Josephine Nicholls started fundraising for a cause close to her heart, she couldn’t stop and now she leads a Not for Profit with a highly engaged board that’s going from strength to strength. Nicholls is this week’s Changemaker.

Nicholls founded Brainwave, a Not for Profit that helps families living with paediatric brain illness and injury, when her son Nic was diagnosed with a brain tumour at the age of six.

At first, Nicholls raised funds to replace unreliable hospital equipment but soon shifted focus to helping families – from paying bills to buying expensive equipment like wheelchairs and modify their homes with necessities like ramps.

Now it its 20th year, Brainwave has expanded further, running free family events to help stressed parents, sick kids and frequently overlooked siblings, take a break.

Brainwave is also about to launch a members-only online forum called Brainspace and its patrons include swimmer Michael Klim and former rugby great George Gregan.

What drew you to the Not for Profit sector?

I grew up with a mother who was heavily involved in the NFP sector. At one point my sisters and I added up her commitments and she was on 21 committees, so a sense of community was instilled from an early age.

We were always taught that no matter what happened in your life there is always someone much worse off and that is very true. At age 12 I was doing Meals on Wheels. My younger sister and I would come home from boarding school and two days into our holidays Mum would ask for our help.

I actually loved it and grew fond of many of the recipients of the meals; it certainly gave me an insight into a world very different to my own upbringing. But ultimately it was when my eldest son Nic developed a brain tumour that I was inspired to start a Not For Profit of my own in Brainwave to raise funds and provide support for families whose children have brain illnesses or injuries.

We’re still the only charity in the country doing this work in the paediatric sector. It wasn’t a premeditated decision, but once I started fundraising and realised I could actually help people and make a difference, I didn’t want to stop.

How long have you been working in the Not for Profit sector?

I’ve been working in the sector for 20 years, but I did my first fundraiser when I was 18. I grew up in a country town in North West Tasmania and as a teenager it could be a little boring at times, so I decided to liven things up with a local band in one of the community halls.  

I went to the local police station and applied for a service of alcohol permit and then went about selling tickets.  

We made $1,000 that night (36 years ago) and donated it to a local centre for children who couldn’t attend mainstream schools.  I had no idea then I’d end up working in the NFP sector one day.

What was your first job in the Not for Profit sector?

I was the director of a small boutique marketing agency before I started Brainwave.

What is the most rewarding part of your work?

The most rewarding part of working with Brainwave is knowing what I do adds value to other people’s lives.

Over 20 years I have met with many families and had the privilege of meeting their children and being involved in Brainwave’s family days and weekend camps. The joy they receive from the respite these events provide is very humbling.

They’re so grateful for the interaction with other families facing similar hurdles, and the relationships they form are often very powerful.

What has been the most challenging part of your work?

The most challenging part for me has always been raising the money. And the same could probably be said for most charities.

For our first eight years we lived hand to mouth and had no paid staff. Every cent we raised went to helping our families.

Starting from a base of no capital wasn’t easy. With no Government funding we struggled at times.  

In the years since we have formed a small team and strengthened the organisation with a highly motivated board, a principal corporate with Mercedes-Benz, generous corporate sponsors and supporters including two fundraising committees.

In terms of your work sitting on a Not for Profit board, what would you say is the key to an effective NFP board?

An active chairman and board members with a diversity of skills: commitment, passion for the cause, drive to grow the organisation, strategic thinking that can shape the organisation.

At Brainwave we have tried to attract a good balance of skills: financial, legal, media, advertising and marketing.

I’m particularly excited that Sara James Butcher (an Emmy Award winning foreign correspondent for NBC News and author of An American in Oz) has just accepted a position on our board.  

Sara is a great example of a busy working mother who won’t be a director who sits on her hands or just attends board meetings. I don’t think we’ll be able to stop her, which is great.

What do you like best about working in your current organisation?

I have to say I’m as passionate about Brainwave today as I was when I founded it 20 years ago. Obviously my role has evolved over the years.

Our GM now handles much of the day-to-day running of the organisation which frees me up to work with fellow board members on longer term projects and planning.

I consider my greatest achievement to be … my two gorgeous sons.  There is no job more important than raising children.

Favourite saying …

No rear view mirrors.

I’m always being asked …

How do you keep going with everything you’ve been through? I’ve faced some pretty tough times in my life, including the loss of my father and only brother, my second husband, and our country hideaway in the Black Saturday bushfires.

I’ve received incredible support from my family, including my two sons Nicholas and Edward, and my work with Brainwave has given me a focus outside of myself.

What are you reading/watching/listening to at the moment?  

I’m reading Hannah Kent’s Burial Rites. I’m in awe of her ability to write such engaging prose. I’m listening to Mama Kin’s The Magician’s Daughter.

My eldest son just produced her video clip for Redwood River.

School taught me…

self-discipline and resilience. I went to a boarding school.

What are you currently working on in your organisation?

This is Brainwave’s 20th year and we have a number of major projects on the go including one I am working on as a fundraiser for the organisation.

It’s an initiative I came up with called WAM (Wine, Art & Music)  featuring paintings and wine made by our chairman David Blackley (ex Clemenger BBDO chair) and music by piano maestro Peter Sullivan. It’ll be held on the evening of Wednesday 28th May at The Melbourne Savage Club.

I’m also busy working with our Ambassador Michael Klim on our new Community Service Announcement for television and radio.  Michael has been a patron for over eight years and is a great supporter of Brainwave.