Category: Big Freeze

It’s less lonely when you know Aussies are joining the battle

Heather was a successful radio producer and communications consultant before she was diagnosed with bulbar MND in 2017. While initially only her speech was impaired, she gradually lost the use of her limbs and fingers and is now using a wheelchair to move, and an eye-gaze tablet to write.

She says the impact of her diagnosis has been ‘devastating’.

“We’re living with grief and uncertainty every day,” she says. “We’re all grieving in our own way. MND is an extremely cruel disease that could strike your family or friends any time. No known cause, no cure yet. And the number of people getting MND is increasing every year.”

However, she says the efforts and support of all those raising much-needed funds and awareness for MND research provides some comfort.

“Having a chronic disease can be a very lonely experience even if you’re surrounded by love and support. It’s less lonely when you know lots of effort is going into finding a cure and Aussies are aware and joining the battle” she adds.

In her own battle with MND, Heather has still found avenues of hope – seeking joy wherever she could find it.

“When she diagnosed MND, my neurologist suggested thinking of it as ‘living with MND’. Emphasis on living. Because my version of MND started with slurred speech rather than weak limbs, I took up ballroom dancing and went travelling with my family,” says Heather.

“For the first two years I could still live independently. When I got the wheelchair, I found a writing coach and delighted in typing stories and poems. When my fingers stopped working last year, fortunately I  could borrow an eye gaze tablet. Instead of fingertips tapping on the keyboard, the software tracks my eyes as I look at each letter. I can chat, email, text with an eye gaze tablet. Watch TV, movies, and search the Internet. I relish this freedom even though I’m paralysed.”

Technological advancements may have helped ease some of the challenges that come alongside living with MND, yet it is only through continued investment into clinical trials that effective treatments, and ultimately a cure for MND can be found. It is for Heather, and all others who suffer from MND that we continue our fight, and we thank her for sharing her story with us.

 

As part of our partnership with Coles, we’ve been speaking with people across Australia who have been personally affected by MND, documenting their stories and experiences to shed a light on just what living with this disease is like. People like Heather McLean. 

Just “Do it!”

 

To find out more about hosting your own DIY big freeze visit https://diybigfreeze.com.au/

DIY Big Freeze events have become almost as legendary as the Big Freeze at the ‘G thanks to wonderful supporters like Naomi Beasley who rally their community, have a ton of fun and raise important funds for FightMND.

Sharing her story with us, Naomi starts by explaining that her mother Lorna sadly lost her battle with MND in 2002. In her honour, Naomi decided to join the FightMND Army.

Lorna’s Girls at the top of the Echuca Moama Big Freeze slide

Naomi rallied her troops and created two fundraising teams. “Lorna’s Girls” which is made up of her and her girlfriends, and “Lorna’s Cobram Crew” which is led by Naomi’s two brothers and husband.

“Lorna’s Girls” started their fundraising journey with relatively small events, like movie nights, sausage sizzles and raffles, a “Big Night Out” and a “Ladies Day Out”.

Meanwhile “Lorna’s Cobram Crew” established an annual golf day, and quickly realised it was a great way to consistently raise funds and entice returning participants, year after year.

But the Big Freeze called, and together Naomi and her support teams took the plunge, called on their community, and founded the Echuca Moama Big Freeze. The inaugural event was hugely successful and brought their whole region together for a fabulous day that raised vital funds for MND research. They are already planning the next Echuca Moana Big Freeze and are aiming for it to become an annual event, just like the Big Freeze at the ‘G.

“In doing something for others we also brought our community together in fabulous social gatherings that allowed us to share a common goal of finding a cure for MND,” said Naomi.

“All of these events were not only enjoyable for our fundraising team, our local communities have also been very supportive of our events.”

When asked what she would say to anyone thinking about organising a fundraiser for FightMND Naomi says “Do it!”

The Echuca Moama Big Freeze

Not only has she found fundraising for FightMND to be extremely rewarding from a personal perspective, knowing that she is providing hope to those living with MND and that one day there will be a cure for MND makes it even more worthwhile.

What made her most happy about fundraising for FightMND?

“It is most definitely the social side, seeing people come together to have a great fun time while raising much needed funds is so gratifying” says Naomi.

To find out how you can host your own DIY Big Freeze visit https://diybigfreeze.com.au/

 

Big Freeze Brings a Volunteering Family Together

Tracey and her family have been part of the FightMND Army since the very beginning – with the whole Ashton family working the beanie tent at Fed Square for every Big Freeze. 

We caught up with Tracey to ask her why she joined the fight against MND, and to share her favourite moments as part of the Army.

Head of Counselling at St Joseph’s College Ferntree Gully by day, Tracey has dedicated her spare time to the FightMND Army every Big Freeze since 2015 – alongside her growing family. Each year, they set up the beanie tent outside Federation Square and help sell our iconic blue beanies to anyone and everyone – raising crucial funds while helping to create a fun and celebratory atmosphere that the Big Freeze has become known for. 

“Being part of this Army has been a really special and meaningful experience,” Tracey says. “Each year our family meets and as a group man the tent at Fed Square. My husband Greg, our eldest son Sam and his wife Sarah, our daughter Bess and her husband Jason and our youngest son Darcy. This year we also have our 7 month old grandson Harvey joining us.”

“It is really wonderful and pleasing as a parent that our kids have decided to share with us in committing to work for such a worthwhile cause, devoting their time and efforts in hopefully making a difference to others’ lives in the future,” she adds. 

The Ashton family approach each year with enthusiasm, excitement and an amazing sense of community – we don’t know what the Big Freeze would look like without them! Their beanie sales have become an integral part of the yearly campaign, with their son Sam selling off his own beanie as a now-annual tradition.

“In our first year of selling Beanies, at Fed Square we sold out so Sam, our eldest son (at the crowd’s request) auctioned off his own Beanie. This has now become a tradition with Sam always competing to better the sum he received the previous year,” says Tracey.

The family has seen the devastating impacts of Motor Neurone Disease first hand, and were motivated to join the fight against MND as a result. 

“I have two personal connections with MND,” Tracey says. “My best friend Lou Mckenna, is Lauren Daniher’s mother in-law and a friend of mine from University. Mick Rodger passed away from MND in 2010. These personal connections have inspired me to fight and work towards raising funds for a cure.”

“MND is such a brutal and cruel disease which until recently hadn’t received funds for research, unlike other diseases that have been well supported with funding. Neale Daniher’s selfless work in starting this cause and raising an Army is truly inspirational. Witnessing the generosity of the community and also hearing the stories from people of their personal connection to MND is very powerful. These moments are very memorable and it is a real privilege to be part of this.”

We’re grateful to include people like Tracey in our fight against the beast, and can’t wait to see her whole family at Big Freeze 7!

 

If you’re interested in volunteering for FightMND, you can find out more at https://fightmnd.org.au/get-involved/.

The Big Freeze is Back!

The Big Freeze is back for its seventh year, and we are so excited to make it bigger and better than ever. 

Sales of our iconic blue beanies were launched on Monday 10th May and we’ve already been blown away by the support and enthusiasm of the FightMND Army. 

This year we’re bringing in two main themes for our Big Freeze campaign; ‘Play On’, and ‘V.I.B.’- or ‘Very Important Beanie’.

We have all faced adversity in our lives, and ‘Play On’ speaks to the fact that in these situations we have the choice to surrender, or keep going. As Neale reaches a point in his battle with MND where he is no longer able to lead the charge, we’re asking our Army to take up the mantle and ‘Play On’ in his absence.

While some amazing progress has been made in our search for a cure, the fight is not yet over. MND isn’t finished and so we continue our quest to find a cure, We thank you for continuing to fight alongside us.

Our V.I.B. remains one of the best ways to support our cause – and this year we want to highlight just how important the seemingly simple act of buying a beanie is. They’re more than just something to keep your head warm, they’re a crucial step in raising funds to find treatment, and one day a cure for Motor Neurone Disease. Everyone who buys a V.I.B. is making a tangible difference. 

The beanies can be found at your local Coles, Coles Express or Bunnings – or via our website. Adult size beanies are still just $20, and we’ve also introduced a limited number of children’s beanies – retailing at $17.50 each (available exclusively at fightmnd.org.au). 

 

Share your beanie shot for a chance to win!

This year we’re holding our beanie competition again, giving you the chance to win AFL Grand Final tickets, as well as $500 vouchers for Coles and Bunnings. 

All you have to do is snap a pic in your ‘Play On’ beanie and share it on Instagram, making sure to tag @fightmnd #VIB #BigFreeze7 #PlayOnBF7 for your chance to win.

FightMND Instagram followers will vote on the winning shot, so be creative and have fun!

 

GRAND FINAL AFL AUTHORISATION CODE: GFAFL21/22