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16 May, 2021

Charity celebrates World Moyamoya day

HIGHLIGHTS abounded at the inaugural Moyamoya Blue Tie Ball, held at the Pullman Reef Casino in Cairns on Saturday night.


Moyamoya's new promotional resources – the Big Blue Brain (pictured) and their new video donated by the Director of the new local fi lm/video production company, Uli Lenitschek of Video Experience, were both unveiled at Saturday night's Blue Tie Ball

BY SALLY TURLEY  

HIGHLIGHTS abounded at the inaugural Moyamoya Blue Tie Ball, held at the Pullman Reef Casino in Cairns on Saturday night. 

The big blue brain, under construction these last months, was launched complete with the eruption of a human-sized blue pigeon from the top of its skull, making for a very visible duo.

Moyamoya Australia's leader, Nicola Baker was thrilled to announce she was now able to offer eight grants of $300 to newly diagnosed patients or sufferers in the acute stages of the disease who were struggling financially.

She said their group's work was about “putting money back in pockets of families needing to pay taxi fares and other unexpected costs.”

Australia's leading figure in the disease, Sydney neurosurgeon, Professor Marcus Stoodley, who saved Nicola's son Jed's life several years ago, decided to travel to Cairns and speak at the ball, which sold out twice over, at his own expense.

He was stunned to be on the receiving end of a $10,000 donation to Macquarie University Neurosciences department from Moyamoya Australia, to fund further research into the disease. 

The money has been raised by the charity over the last 10 months during events such as the Smokey Blue Rally and the Great Blue Pigeon Race.

Ms Baker also chose the ball as the platform for the release of Moyamoya Australia's new promotional video. Crafted and generously donated by Uli Lenitschek, Director of the new video/film production company “Video Experience.” 

The locally filmed and produced video valued at $3,000, was shown on the night, it will soon be uploaded to their Facebook page and will form part of speeches made by the charity in the future. Ms Lenitschek also donated an Epic homepage video to the same value and it was auctioned on the night. 

 As if all that wasn't enough, Jed Baker was reunited with an old friend on the night. When Jed was having his first round of treatment in Sydney, at the age of 14, he became friends with Taliah, a fellow sufferer from Darwin. She has since moved to Cairns and they were able to catch up at the ball. 

Recent successes have added a new level of momentum to the group's campaign for recognition of World Moyamoya Day in Australia on May 6 to celebrate the survival of sufferers of this rare disease. 

Ms Baker has been campaigning to have this disease of the brain included on the Australian calendar. With the help of Bob Katter MP, Ms Baker has contacted the Assistant Minister for Finance, Charities and Electoral Matters, the Hon Zed Seselja and Assistant Minister to the Prime Minister and Cabinet, Ben Morton MP, in an attempt to further her cause. 

She has been told however that these sort of events generally evolve without government involvement and that she should contact the Governor-General and request a proclamation of a National Day of Observance. Her response - “Look out GG, I'll be in touch.” 

“Moyamoya patients and their families have been helping to actively promote awareness of the disease on May 6. We had several parties participating in 'Blue for Moyamoya day' last Thursday, and we even had a local council in Wodonga light up their old water tower blue to mark the occasion,” Ms Baker said. 

Nicola Baker's son Jed had his first stroke at 11 months of age and Ms Baker established the charity to raise awareness of this rare illness and to give support to those who are suffering from it. 

“When Jed was finally diagnosed, after years of not knowing why he was so unwell, there was very little information or support available to help us understand the disease,” but as awareness grows, Nicola said neurosurgeons have begun putting newly diagnosed patients in contact with Moyamoya Australia for information and support.

Involvement in the Charity TV Global competition, the Adventure All Stars, will be a huge win/win for all involved. The competition will be broadcast 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. 

Meanwhile the massive, newly completed 180cm fibreglass, blue brain will be pushed by members and supporters from Smithfield to Cairns on September 18, as a fund raiser at the end of disability week and will go on to feature at all the local shows and festivals. 

For 14 year old Jed and his family, life goes on and Jed, who likes nothing better than playing in the yard with his pirate ships or jumping on his trampoline, has the support of his 11 year old brother Charlie, his eight year old sister Lucy and his school friends. They look out for each other and share the good and the bad times.

Moyamoya's next event will be the screening of 'Kiss the Ground' in the Majestic Theatre, Malanda on Saturday May 22nd. The movie, narrated by Woody Harrelson, is a documentary designed to raise awareness about regenerative farming. A panel of local regenerative farmers will be present after the movie to answer questions from the audience. 

Tickets are only available on Eventbrite online and refreshments will be on sale. Funds raised will benefit Wet Tropics Soilcare and Terrain NRM as well as Moyamoya. 

For more information, check out the following links – www. www.charitytvglobal.com or www.7plus.com.au/adventureall-stars  


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