What is Moyamoya Disease

Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia.

The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage. Moyamoya disease was first described in Japan in the 1960’s and it has since been found in individuals in the United States, Europe, Australia, and Africa.

The disease primarily affects children, but it can also occur in adults. In children, the first symptom of Moyamoya disease is often stroke, or recurrent transient ischaemic attacks (TIA, commonly referred to as “mini-strokes”), frequently accompanied by muscular weakness or paralysis affecting one side of the body, or seizures.

Adults most often experience a hemorrhagic stroke due to recurring blood clots in the affected brain vessels.  Individuals with this disorder may have disturbed consciousness, speech deficits (usually aphasia), sensory and cognitive impairments, involuntary movements, and vision problems.

Because it tends to run in families, researchers think that Moyamoya disease is the result of inherited genetic abnormalities. Studies that look for the abnormal gene(s) may help reveal the bio mechanisms that cause the disorder.

Is there any treatment?

There are several types of revascularization surgery that can restore blood flow to the brain by opening narrowed blood vessels or by bypassing blocked arteries.  Children usually respond better to revascularization surgery than adults, but the majority of individuals have no further strokes or related problems after surgery.

What is the prognosis?

Without surgery, the majority of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries. Without treatment, Moyamoya disease can be fatal as the result of intracerebral haemorrhage.

What research is being done?

The NINDS conducts neurological research in laboratories at the NIH and also supports additional research through grants to major medical institutions across the country. These studies, which range from clinical trials to investigations of basic biological mechanisms, are aimed at discovering how and why diseases develop in the brain, and focus on finding ways to prevent, treat, or cure them.

The article below is about Revascularization Surgery for Moyamoya Vasculopathy, download and have a read as it is a great source of information.

Watch our Moyamoya Documentary

Thanks to Danae Jones Consulting for their assistance putting this film together.

What's Involved?

  1. Choose your own challenge, some ideas:
    • Read a Book
    • Set a Fitness Goal
    • Cook up a storm and share your goodies
    • Random Acts of Kindness
    • The choice is yours!
  2. Set your own timeline. Will you do 5 days, or the entire month?
  3. Create or join a team, or fly solo.
  4. Share your fundraising link with your family and friends and ask for their support.
  5. Turn Australia Blue for World Moyamoya Day 6th May!

Our Annual Fundraising Events

Smokey Blue ’23

Saturday 16th September 2023

Grab your favourite road trip crew and join the biggest Treasure Hunt in FNQ.

Into the Blue

Saturday 4th May 2024

Jump aboard for a fantastic evening where we support and spread the word about Moyamoya!

Great Blue Pigeon Race

Race Day: Saturday 6th July 2024

Back a pigeon for your chance to win the prize jackpot!

‘The thing about Jed’

The thing about Jed is the story of extremes, from a diagnosis of a rare disease, to the highs of meeting one of Hollywood’s favourite characters, and then to the crashing lows of losing a friend in the most tragic circumstances. The story tells of how one family make daily choices, all taught to them by their son, who suffers from a rare brain disease, Moyamoya.

Released: World Moyamoya Day – Saturday 6th May 2023

‘My Mate Jed’

My Mate Jed is a delightful story for kids, about kids, who stroke.  This is the 3rd of a series by Crystal Leonardi, and Nicola Baker’s first children’s book collaboration.

Released: Saturday 4th May 2024

Our Awards

Bronze - People's Choice Non-Profit

Women Changing the World 2024

Finalist - People's Choice Non-Profit

Women Changing the World 2024

Finalist - Australian Small Business Champion

Awards 2024

 

Bronze Book Cover Award - The Thing About Jed

Wickham St George 2023

 

Finalist - Community Leader of the Year

Beam Awards 2024

 

Finalist - Regional Business of the Year

Beam Awards 2024

 

Women Making a Difference

Nicola Baker included in publication for her dedication to Moyamoya Australia

 

Cairns Business Womens Club Winner Michelle Commins Legacy Award

2022

Rural & Remote Business Excellence Award

2023

 

Not for Profit Excellence Award, Finalist, AusmMumpreneur

2023

 

Stroke Foundation Fundraiser of the Year Award

2022

 

Adventure
All Star Award

2022

 

Cairns Business Womens Club Winner Michelle Commins Legacy Award

2022

Great Blue Pigeon Race

$20 a ticket
35 pigeons racing
$200 CASH prize if your bird comes in first

These homing pigeons love to fly, and for the race will be flying from Innisfail to their home in Cairns.

We have unlimited tickets as we will run multiple ‘cards’ of the pigeons for the race. Please let all of your friends know about the event!

Race Day – Saturday 3rd August. Tune in to our Facebook page for a livestream of the finish line at the race.

Back a Bird