Over a number of years many patients had suggested that there should be a National Australian Amyloidosis Day in Australia so that there could be a united effort across Australia to raise awareness about this devastating group of diseases known as Amyloidosis.
May 8 was chosen and registered as the Australian National Amyloidosis Day by Mrs Trisha Gardiner-Wilson of the Adam Gardiner Fund INC. in conjunction with Westmead amyloidosis centre in 2016 in honour of her husband Adam who had died from AL amyloidosis.
At that time Jade Vincent, the daughter of a newly diagnosed Queensland patient with AL Amyloidosis, Garry Paxton, suggested a national amyloidosis ribbon to accompany this day would add to raising awareness about amyloidosis.
Jade proposed a red ribbon with the words Amyloidosis Day, May 8.
This ribbon was quickly adopted by patients and families and the Amyloidosis Centres and one of the Brisbane amyloidosis patient’s widow kindly made up a box of red ribbons to be sold for a gold coin to raise money for PAH amyloidosis Centre research program.
Sadly, Jade’s dad lost his battle with amyloidosis at Christmas 2018, but his wife Sandy, Jade and all Garry’s family hope that every time the amyloidosis ribbon is displayed it will serve to commemorate Garry and all those whose courageous journey with amyloidosis has ended. And will hopefully continue to raise awareness, so that one day a cure can be found for these rare, complicated diseases.
“In 2019 The Australian Amyloidosis Network hosted a series of workshops with two overseas speakers for doctors and health professionals and patients and families in Brisbane, Sydney, Melbourne Adelaide and Perth to coincide with Amyloidosis Day on May 8 which on this occasion was stretched into an amyloidosis week”
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