Community & Business
29 April, 2026
Celebrity support for rare disease
MULTIPLE Australian celebrities and sports stars have thrown their support behind Moyamoya Australia in the lead up to World Moyamoya Day early next month, with the organisation also running its #5daysofMay campaign.
Jeff Horn, Mark Geyer, Lucy Durack, and Fitzy from the Fitzy, Wippa and Kate radio show, among others, have sent videos wishing all “Moyamoya Warriors” the best for World Moyamoya Day.
The collaboration aims to raise the profile of Moyamoya Disease so crucial funding can be obtained to continue to search for the cure for this rare disease.
Ravenshoe local Nicola Baker, founder of Moyamoya Australia, has been working towards obtaining research funding because “there are so many questions still unanswered”.
“Moyamoya Australia has already contributed $100,000 to Macquarie University Neurosciences to establish further resources for Moyamoya patients, including a database of genetics. There is a key there somewhere, and it’s like finding a needle in a haystack,” she said.
“Imagine the day when we can identify the genetic link that ties all Moyamoya patients together. We can already see a connection between Moyamoya Disease and Downs Syndrome, and also with a gene called NF213, however, there is still so much more to discover”.
In the lead up to World Moyamoya Day on 6 May, Moyamoya Australia is running its #5daysofMay campaign. This is peer-to-peer fundraising from 1-5 May which sees participants identify their own challenge, share their journey, and help raise awareness of the disease. The campaign is for all abilities and ages.
“My challenge is to walk five kilometres each day for the first five days of May. We have another young man, Harrison Wese, who had a stroke two years ago and was treated for Moyamoya Disease. Harrison is running 150 kilometres between 6 April and 6 May – a feat that he never imagined himself undertaking.”
The wider community can help by joining in on the challenge or by supporting a team. For more information or to donate, visit www.moyamoyaaustralia.org.au/campaign/5-days-of-may-2026.
Moyamoya Disease is a progressive brain disease that affects 1 in 100,000 people, and if not treated with brain surgery, it can be fatal.
To view the video, visit www.facebook.com/reel/1537110688457699.
Celebrities supporting World Moyamoya Day:
Fitzy from Nova radio
Jeff Horne – former WBO World Boxing Champion
Brooke Kilowsky – winner, The Summit Season 1
Lanard Copeland – former NBA and NBL player
Shane Kelly – Four-time Olympic gold medalist
Troy Gray – former AFL player for Sydney Swans
Mark Geyer – former rugby league player
Matthew Nicks – coach, Adelaide Crows
Lucy Durack – theatre and television star, and judge on Australia’s Got Talent
