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Axedale Tough Mudders
Axedale Tavern
Axedale Tough Mudders
Story
Hi there!!
Six unfit Axedale Tavern Staff members (Dutchy, Corrine, Belinda, Ben, Chris & Mick) have registered to complete the 20 km Tough Mudder Obstacle Race in Melbourne, Australia in November. Why? We are raising funds for the Neimann-Pick Type C Disease Foundation.
NPC Disease is a terminal, progressive, neurological disease with a life expectancy of only 10 years from time of diagnosis. There are only approximately 500 world wide diagnosed patients aged from new born to adulthood. Approximately only 10-15 cases of those diagnosed, reside in Australia, with 4 of these local to Axedale, Victoria. Brothers Tim & Matthew Lloyd and brother & sister, Taylor & Aaron Adams, are regulars at the Tavern & we have seen first hand the heartbreaking way in which this disease affects those diagnosed, aswell as their families & friends. We want Tim, Matthew, Taylor & Aaron to know we love them & will continue to do whatever we can to assist in the fundraising efforts currently underway which could potentially increase the life span and quality of life for all sufferers.
Tough Mudder is a 20km race, where we will compete together as a team (not a relay!) crawling through mud, jumping from heights, battling electric shock ropes, swimming through ice dams and falling from monkey bars into water. Not only does this scare some of us, but physically is a huge challenge, however we hope that by completing this course together, we raise much needed funds and awareness for the Australian NPC Disease Foundation.
Donations made through this platform are secure and will be remitted directly through to the NPC Disease Foundation and a Tax Receipt will be emailed to you.
Thanks so much for your support!
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The Australian NPC Disease Foundation Inc
[h1]Support Australians Living with Niemann-Pick Type C Disease[/h1]
The Australian NPC Disease Foundation Inc. (ANPDF) exists to support children, adults, and families impacted by Niemann-Pick Type C (NPC) disease — a rare, devastating, and fatal genetic condition.
NPC is a progressive neurological disorder with no cure and a life expectancy of just 10 years from diagnosis. It affects approximately 1 in 150,000 births. Fewer than 500 people worldwide are currently diagnosed, with only 10 to 15 known cases in Australia.
NPC can strike at any age — from infancy through adulthood — and while symptoms and progression vary, the outcome is tragically the same: early death.
[h2]Common symptoms include:[/h2]
[ul][li]Slurred or lost speech[/li]
[li]Loss of balance and mobility (often leading to wheelchair use or being bedridden)[/li]
[li]Difficulty swallowing, risking aspiration, pneumonia, or requiring feeding tubes[/li]
[li]Dementia, memory loss, cognitive decline, and behavioural changes[/li]
[li]Severe muscle stiffness, limb distortion, and painful dystonia[/li]
[li]Seizures ranging from mild to life-threatening[/li]
[li]Hallucinations and psychotic episodes[/li]
[li]And ultimately, loss of life[/li]
[/ul]
There is currentlyno cure — only limited symptomatic treatments.
[h2]Hope Through Research[/h2]
Right now, the ANPDF is helping fund vital research at the University of Melbourne exploring potential treatment options using zinc and copper compounds in NPC mouse models. Early indications show promise for slowing disease progression and improving quality of life.
To continue this work, we urgently need $120,000 annually to cover research staff and care for the NPC mice. This research could be a game-changer — not only for Australians living with NPC, but families across the world.
[h2]How You Can Help[/h2]
A small community of Australian families has already begun fundraising, but they can’t do it alone.
Your donation today will help us fund this critical research and bring hope to those living with NPC.
Together, we can fight for time, treatment, and a better future.
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