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Karina Taylor
karina taylor
Karina Taylor
Story
Hi there!
I'm going to run 100km for a cause that's close to my heart. I’d appreciate any contribution, big or small. I plan to run the Great Ocean Walk 100km ultra trail run on October 17th 2015. This run starts in Apollo Bay and follows the walking track all the way to the twelve apostles. It's a huge challenge for me, but your support will help me achieve the goal.
The charity I have chosen is the Australian NPC Disease Foundation. My niece and nephew, Taylor and Aaron, have both been diagnosed with Nieman Pick Type C, a terrible rare and at present incurable, genetic disease. I have watched, shocked and saddened as these two beautiful, energetic and fun loving kids deteriorate in such a short space of time. We desperately need funds for vital research to help us understand more about this ultimately fatal disease. There is currently no government funding so we need to raise all the funds we can.
Please click the DONATE button to help.
Donations made through this platform are secure and will be remitted directly through to my charity.
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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