Bumblebee for MND

08/10/2026

Happy 1st week-iversary of Tofersen being on the PBS 🥳🎂🎊 and we haven't (and won't) stopped celebrating 💛🖤

Tofersen (QALSODY®), a treatment for ALS caused by a change in the SOD1 gene, is now available through the Pharmaceutical Benefits Scheme (PBS) for eligible people.

Around 2% of people with ALS have a change in the SOD1 gene. A genetic test is needed to confirm this before treatment.

Evidence shows tofersen can slow the progression of SOD1-ALS. Research into its longer-term benefits is continuing.

Talk to your neurologist or MND clinic to find out if tofersen may be suitable for you.

Learn more about tofersen, genetic testing and PBS access: https://www.mndaustralia.org.au/info/living-with-mnd/medication-for-mnd/

05/10/2026

We are very happy and greatfull to announce that Bumblebee for MND will be at the Show 'n' Shine on the 25th October. It would be great if you can support it like they do us.
Can't wait to see you there.

01/10/2026

TODAY IS A MILESTONE IN THE ROAD TO AN MND CURE!
Last month, members of the Bumblebee for MND team joined hundreds of researchers, clinicians, allied health, policy makers, MND association staff and people with lived experience at the MND Australia National Motor Neurone Disease Conference in Adelaide. It was a jam packed two days of learning, collaborating and connecting.
The event was made even more special for our family, as we were honored to join Mark Butler MP to announce that a new MND treatment, known as Qalsody or Tofersen, will be added the Pharmaceutical Benefits Scheme (PBS) from today, Oct 1. This secures ongoing, affordable access to the drug, previously only accessible through the drug company's compassionate access program. This is only the third MND drug to be addded to the PBS... ever.
But to be clear, the work is far from over. Tofersen is only effective in a very small subset of all MND cases (~2%): those with a genetic variant in the SOD1 gene. And even then, it is not a cure. Rather tofersen is a treatment (requiring monthly lumbar puncture injections) aiming to slow or plateau the rate of progression. And while we are fortunate to benefit for access to this drug in our family, we are dedicated to continuing to raise money and awareness about MND until there is a cure for all forms of MND.
🔗 To read more information about tofersen as well as Luke's full speech from the press conference, check out the link below
📷 courtesy of MND Australia

06/09/2026

Here we go …
Program and ticketing info to follow

27/08/2026

Thank you to all at the Mt Beauty Hospital Op Shop for arranging a silent auction last month for all their Big Freeze beanies, to raise funds for Bumblebee for MND. Thank you to all that put a bid on the beanies 🙏💛🖤

Congratulations to the winning bidder with the bid of $100. We really appreciate your support! 🐝

18/08/2026

Cruising for a cause at Show Us Ya Wheels 2026 🎲

We’re proud to announce that all funds raised from the Numurkah Roll the Dice Cruise on Saturday, October 17 will be donated to Bumblebee for MND.

Ken and Kim are the wonderful people behind Bumblebee MND, working tirelessly to raise funds and awareness for Motor Neurone Disease. It was pretty special being able to share the news with them that this year’s cruise will be supporting their efforts.

So when you join us for the Roll the Dice Cruise, you’re not just getting out on the road and being part of a great weekend, you’re helping support an important cause and the incredible work Ken and Kim continue to do.

📅 Saturday, October 17 at 11am
🎲 Numurkah Roll the Dice Cruise. Ultimate Auto Repairs - 85/75 Meiklejohn St
💛All funds raised supporting Bumblebee MND

Another great reason to get behind Show Us Ya Wheels 2026.

10/07/2026

Back over the Easter long weekend 2026, Bumblebee traveled to Corowa for the Repco 2026 Australian Van Nationals 🐰🐣🍫What a great, well organised weekend. A chance for many to catch up with new friends and old. People traveling from near and far. The team at Bumblebee for MND are grateful for the huge amount of support that we received.
Thank you, Matt for having Bumblebee as one of your charities to benefit from your charity auction. And thank you to all of the volunteers that helped make this weekend such a success. As well as an extra special shout out to our valued helpers Kerrie, Danny and Alan: thank you for all your support!
Thank you Anthony for getting us on board and donating the fantastic neon signs for the Auction supporting Bumblebee's fundraising efforts. Also thank you to Chris Bowen and his offsider Josh from Repco for supplying fantastic products for the Auction.
Thank you to all the people that attended the auction and supported Bumblebee. Each time you participated in the auction, submitted your winning bids, and took home your purchases, you helped us to raise a total of all of $8,290 for Fight MND !
To all the people who came up to the Bumblebee tent and bought our merchandise and made donations, you helped raise a further $1,727! We appreciate the support that you gave to us on that weekend.
We love that you all want to join us and give hope to those impacted by MND. You have all made a difference raising a total of $10,017. Hope to see you all again some time soon 💛🖤

26/06/2026

Big news for MND research and care in NSW!

19/06/2026

Love to see how proud the Ballarat community have been of their very own Dr Josh Saunders ! This is a lovely news story interviewing Josh after his icey slide at the Fight MND Big Freeze earlier this month 🩵🥶🧊 Josh really highlights the power of everyday grassroots fundraisers like Bumblebee 🐝💛🖤

18/06/2026

Back at the end of May, just before all the craziness of the Big Freeze, Bumblebee once again attended one of our favourite annual events, the Historic Winton at Winton Motor Raceway.
Congratulations to the Austin 7 Club Inc for putting on a fantastic weekend and for supporting Bumblebee for MND. Special thanks to John Kessner and all the volunteers for a great weekend.
Thanks to the generosity of all those who attended, we were delighted to raise $1400 for Fight MND.
As always, we want to shout out and thank all our wonderful family that did a fantastic job all weekend. We appreciate all your effort and support 💛🖤