Hi Hannah, tell us all about your Offbeat ’23 event! How did this all come about?

I recently started my own music events company, Renegade Events, and for years I’ve thought a rock concert would be a fun way to raise awareness and funds for Parkinson’s Disease research, which is very close to my heart as both my brother and dad suffer with PD. So I did!

What were some of the highlights of the night?

That’s hard! We had some amazing auction items that were generously donated. I was quite in love with the painting “Waking Shaking” which was done by a fabulous local artist, Lottie Galvin. If anyone is interested in hearing Lottie’s description and motivation behind the painting, you can find out more here. Freo Guitars donated a Wolf Guitar and Corsaire Aviation donated a gorgeous full-day package.

I’d say the general consensus would be the headlining band The Feel Alrights, they were just brilliant! I had people coming up to me all night (and for days after) saying how awesome and fun they were. I think music brings people together and that was really felt on the night.

What drives your commitment to fundraise for Parkinson’s?

My brother was diagnosed with Young Onset Parkinson’s Disease in 2009 when he was 29. He has a rare, aggressive form of PD that affects both sides of his brain, which made it challenging to find an effective treatment.

He went from being the life of the party, always go, go, go, super active, big plans, to being frozen. He couldn’t play with his kids, and needed (and still needs) help eating, dressing, everything. On bad days, it could take him hours just to get to the toilet. Often when I visited he’d ask me to lift his hand to his face so he could scratch it. I’d think “how long has the guy been sitting there wanting to scratch an itch!?” When he was in bed, his toes would burn from the sheets because he couldn’t roll over or shift around. He was really, really depressed for a really long time. It is so heartbreaking to watch someone you love go through these changes and deal with these challenges.

A few years ago he had brain surgery to get a Deep Brain Stimulator put in and got quite a bit of movement back, but every second of every day is hard work, tiresome and frustrating. He still needs a lot of help and he’s in a wheelchair quite a bit or at least using a cane. My dad was diagnosed with PD a few years ago. Fortunately, his condition is progressing slower than Leigh’s did but he has a pretty constant tremor and other less noticeable symptoms. It’s exhausting for him and you worry about the future.

What do you wish people understood more about Parkinson’s?

I think we need to educate people and change the “face” of PD from an elderly man with a shaky hand. It’s so much more than that and affects people of all ages, getting younger and younger by the year. Leigh lost a lot, not just in movement and independence but also the future he had envisaged for himself and his family. The kind of dad he would be, the things he’d teach and do with his kids. How he sees himself and how others see him. That’s a huge adjustment. A massive knock to overcome, to accept a new normal and a new version of yourself. No one can tell you how long that should take or how to get there. I think if people knew more about PD, and the myriad of symptoms and that they present differently in everyone, there’d be more support, understanding and less judgement.

Why did you choose to raise funds for Shake It Up Australia?

My family have done a few fundraising events for Shake It Up over the years. I like that all funds go to research and that the Michael J Fox Foundation matches the funds for groundbreaking research.

What words of advice do you have for others hoping to make a difference for Parkinson’s?

Once I started planning Offbeat, getting out there talking to people, I would say about 75% of people I dealt with had someone close or knew of someone with PD but had no idea about the reality of it. They were very supportive. There’s a lot of help out there if you just get going.