June was an extraordinary month filled with unbelievable experiences… I’m still pinching myself!
I had a number of advocacy commitments, speaking engagements and events planned in the lead up to MND/ALS Global Awareness Day. As I reflect now, it’s mind-boggling to think of the number of people I had the privilege of connecting with, from celebrities helping to raise funds, to people struggling with their own adversity and health challenges. All these incredible experiences have only served to motivate me further to continue to inspire people through my journey with MND.
I kicked off my crazy month down in Melbourne for the Mind Body Spirit Festival. It was wonderful to be back at this event after so many years. I was on stage in the Speakers Lounge on both Saturday and Sunday to deliver my talk, “From Adversity to Awesomeness: The Power of Choice”. It was such a powerful experience to see the audience’ faces fixated on my story. I took the opportunity to sell FightMND beanies and chat with a few people after my talk. I was so touched when, after hearing my story, one woman came back to see me and gifted me with a healing bracelet. On the Sunday I recognised a woman who had also attended my talk the day before. She was with her husband on this occasion and I called her over to chat. She told me she had been so inspired that she just needed her husband to hear my talk as he was struggling with his own brain cancer journey. Just knowing my story helped another person absolutely made my day.
On Monday 12 June I went to the MCG for FightMND’s 9th consecutive Big Freeze. It’s an amazing sight seeing more than 90% of a 83,000 strong crowd at the ‘G’ donning their beanies for this cause. I watched as this year’s Aussie celebrities tackle the Big Freeze slide and took the opportunity to try to meet them all to thank them personally for helping. This is the second year now I’ve attended the BigFreeze lunch. Usually there are only 3 or 4 of us there with MND. I am typically the only one non-verbal, but this year I was joined by the co-founder for FightMND himself, Neale Daniher. Sadly, in 2022 Neale lost his voice to MND, but that hasn’t stopped him. I guarantee his call is as loud as ever. It was wonderful to connect with him again to thank him for his tireless work. It is such a privilege to be part of the Fight MND community who this year raised more than 15.8M to find a cure.
Back home I continued the week with more MND advocacy. This time it was Brisbane’s turn to join the fight, hosting its own Big Freeze – Gabba style! I was invited to proudly don my FightMND beanie to toss the coin at the Brisbane versus Swans Big Freeze match. To be offered this opportunity of a lifetime when in reality I can’t even lift my hands let alone toss a coin, just blows my mind. With so many football crazed friends back in Melbourne watching on, and a crowd of more than 28,500, it was so amazing! I still can’t believe it happened.
Closer to home, I was featured in the June edition of the Sandgate Guide, a monthly magazine distributed throughout Sandgate, Brighton, Deagon and Shorncliffe. This was a wonderful opportunity to raise awareness of MND in my local area, as well as marking MND Queensland’s 40th anniversary. You can take a look here on page 38.
To wrap up a busy month, I attended MND QLD’s Blue Cornflower Tribute Ceremony where I was invited to join guest speakers and share my personal journey of living life with MND. This special event not only raises much needed community awareness, but also pays tribute to those battling MND as well as honouring the lives lost. The highlight was seeing Brisbane’s skyline turn blue with the lighting up of the Story Bridge for national Blue cornflower Day. The view from level 82 of Brisbane Skytower was breathtaking, it gave me goosebumps!
I’m grateful for a couple of quieter weeks at home before I hit the road again in August. My advocacy work continues with an invitation to speak at the upcoming MND Australia Care Conference. Later that month I am meeting with a team of MND researchers from Deakin University. This is another invaluable opportunity to collaborate with researchers and contribute to their ongoing efforts to find a cure for MND. I am more determined than ever to get behind these efforts and only hope it brings us closer to a future where MND no longer exists.
There’s so much happening, stay tuned!