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Community & Business

24 March, 2021

Moyamoya Australia's win injects life into Far North’s calender

EXCITEMENT was in the air last weekend as The Express approached a group of locals, who were celebrating their selection to participate in a global television show, later this year.


Kaysie Butler of Dimbulah, Nikki del Manso of Cairns, Justine McDonnell and Gail Barton, Atherton (back) and Charlie and Nicola Sparkles Baker of Ravenshoe were celebrating the selection of their Moyamoya Australia team to participate in the philanthropic based Adventure All Stars television event hosted by Charity TV Global

BY SALLY TURLEY 

EXCITEMENT was in the air last weekend as The Express approached a group of locals, who were celebrating their selection to participate in a global television show, later this year. 

Being on the show will give them an amazing opportunity to work together to promote and raise money for a cause they are totally invested in, while participating in the adventure of a lifetime. 

Since getting their Moyamoya Australia charity up and running last year, Nicola Sparkles Baker and her team have been a powerhouse organisation, delivering a wide range of original events that have added much to the social landscape of North Queensland. 

They may have a very serious focus for their group, but they make sure everyone has a lot of fun along the way. 

First there was the Great Blue Pigeon Race, last September, where punters registered their pigeon for $20/hd and more than 30 feathered contestants were taken to Babinda where they were released to fly back to Cairns. This event was soon followed by the Smokey Blue Rally on October 3.

The rally commenced Saturday morning and involved contestants checking in to locations at towns throughout the Tablelands on their way to the Undara Experience near Mt Surprise all in time for a night of live entertainment followed by a recovery party the next morning. 

Moyamoya disease is a rare blood vessel (vascular) disorder in which the carotid artery in the skull becomes blocked or narrowed, reducing blood flow to the brain. 

Tiny blood vessels then open up at the base of the brain in an attempt to supply the brain with blood. The condition may cause mini strokes or bleeding in the brain. 

It can also affect how well the patient's brain functions and can cause cognitive and developmental delays or disabilities. 

Nicola Sparkles Baker's son Jed experienced these exact symptoms and after waiting over three years for a diagnosis, they found out he was one of the one in a million Australians to contract Moyamoya. 

By the age of 14, Jed had undergone surgery to all four quadrants of his brain and there was nothing more the Cairns hospital could do for him. 

In a bid to raise the profile of this disease, Nicola applied in late 2020, for her team of 14 to be on the Charity TV Global Show, the Adventure All Stars, where entertainment is combined with philanthropy. 

They got through the initial 600 Australian and New Zealand applicants into the top 30 and received their casting call in January. 

Thrilled with the news of their selection, Ms Baker said winning was only the beginning of the challenge. Her group now have until December 27 to raise $1,000 each per person per month to qualify for the prize of being flown to a secret location and filming 6 adventure-filled days as a reward for all their hard work.

“The most important thing is that we all make the eff ort and get to the finish line together. The team will be flown on the same plane to an exciting location and will be taken bungee jumping, sailing and 4 wheel motorbike riding, and to wineries and race tracks, and to experience whatever that location specialises in,” Ms Baker said.

The project will be a huge win/win for all involved. Charity TV Global get their television show which they will show in 26 Asian countries and all net profits are gifted to their charity partners, meaning Moyamoya will get up to $50,000 profit off the top, to put back into their cause.

“Monies to a total of over $13,000 raised from the rally and the pigeon race last year, were reinvested in a line of merchandise for the group and will go into funding our upcoming ball, but our longer term goal is to get cash into the pockets of those who need it by offering cash grants to families affected by the disease,” Ms Baker said. 

The group have been using the excitement of their win to stimulate a massive brainstorming session for fundraising ideas and the list of events planned is impressive. 

Headlining is the inaugural Blue Tie Ball to be held at the Pullman Reef Hotel Casino in Cairns on Saturday, May 8th. 

Entertainment will be provided by Dr Elephant, Darwin's longest running pub cover band and local singer/songwriter and Tamworth competitor, Rhylee Wilkinson with 4CA's Murray Jones as MC. 

There will be a huge charity auction on the night, including some top shelf items, all auctioned by Anthony Ball and there will be an after party at P J O'Briens for those who want to continue on. 

Dress code will be formal and of course, blue and the $150 tickets include a three course meal and a drink on arrival and the casino is doing accommodation packages for that weekend.

Other exciting events the group are planning to deliver include a winter music and wine festival, the Bendigo bank sponsored Teddy Bears' Picnic to sync with the opening of the Malanda pump bike track in late June and a Karma keg event at Palm Cove on Jed's birthday weekend in October, where they will sell donated beer to the public for whatever they want to pay for it. 

The Great Blue Pigeon Race and the Smokey Blue Rally will run again, as well as Easter raffles and a motorbike ride from Cairns culminating in breakfast on the Tablelands. 

Meanwhile Nicola has been working on building a massive, 180cm fibreglass, blue brain which members and supporters will push from Smithfield to Cairns on September 18 at the end of disability week and which will feature at all the local shows and festivals.

As awareness grows, Nicola said neurosurgeons have begun putting newly diagnosed patients in contact with Moyamoya Australia for information and support.  


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